Kenneth Steven Warr
June 6, 1973 - May 22,2015

   
   My son Kenneth Steven Warr and his wife were involved in a terrible 
   auto accident on Sunday morning, May 4, 2008.  While they were both 
   hurt, Ken sustained the kind of spinal cord injury which is generally 
   expected to result in paralysis of much of his body.  The 4th, 
   5th and 6th cervical vertebra were badly shattered and the C2 
   received a break also.  He was life flighted to Memorial Hermann 
   Hospital in the Texas Medical Center and stabilized.  A "halo" brace 
   was attached to his neck and head to completly immobilize the injury.  
   He was also placed on a respirator to aid in his breathing.

    Ken remains in the Neuro Trauma Intensive Care unit (NTICU) where 
    he is stabilized prior to projected surgery on Wednesday.  He has 
    movement of his shoulders, arms and biceps, and while one of the 
    NTICU staff reported he had some movement in his fingers, neither 
    Kathy nor I have seen any of that.
       
    Tricia is having her injuries tended to at Ben Taub Hospital 
    (also in the Texas Medical Center).  She has sustained a crushed 
    foot and several other possible injuries to her knees, back and neck.
   

    Ken remains in the Neuro Trauma Intensive Care unit (NTICU) where 
    he is stabilized prior to projected surgery on Wednesday.  His 
    right arm seems to be stronger than his left.  No finger movement 
    has been observed.
   
    Tricia has been moved to a new Hospital in northwest Houston.  
    Her family is keeping us posted on her progress while we remain on 
    vigil for Ken.

    He had surgery today (May 7) that went well, but although the bones of the 
    spine will heal, damaged nerves in the spinal cord do not regenerate and 
    his ability to control the lower portion of his body will probably not be 
    recovered.  Tomorrow they expect to begin weaning him from the respirator 
    to determine if he will be able to breathe on his own.
   

    He had the halo removed and we can see his face better.  He looks the same,
    but because of the sedation and pain medication there was little reaction.  
    The nurse cut back on the sedation and he became more responsive.  He even
    tried to smile at a little humor from his brother Dan, so we are optimistic
    he will be back with us soon.  Still no finger movement.
    
    We had a nice visit with Tricia.  She is in a great deal of pain and has 
    some swelling in her foot so they are putting off the surgery until that 
    goes down.
   

    Ken was a great deal more responsive this morning, relieving my greatest 
    fear -- that we might have lost the personality that was/is Ken.  He can't
    talk because of the web of tubes in his mouth, but he nods and shakes his
    head.
    
    In the later visits Ken was not as alert because the nurse kept him 
    more sedated.  She felt the earlier visit was rough on him.
    
    Trish is about the same.
   

    Ken was more responsive this morning even than yesterday.  He still can't
    talk because of the web of tubes in his mouth, but he nods and shakes his
    head and opens his eyes much wider.  Unfortunately his slight fever has 
    turned out to be caused by pneumonia, but the nurse is not too concerned.  
    They are monitoring it, and there seems to be a little improvement.  
    
    They have begun the slow process of weaning him off the respirator.  He has
    so far responded well to lower levels of oxygen. 
    
    

    Ken was tired this morning and although his fever has declined he was less
    responsive to us.
    

    I had to finish up at work today so Kathy went to visit at noon and 2:00.  
    I talked to her afterward and she told me that Ken had had a setback.  His
    pneumonia was worse with a temp of 102, thus not much responsiveness. 
    
    Depressed and prepared for the worst, I arrived at 6:00 PM only to find 
    his spirits much improved.  They had controlled his temp and cut back on 
    the sedative.  Ken's best friend, Paul and I went in together and we 
    immediately sensed his mood had improved.  His eyes were wide open and 
    though he still can't talk (tubes), he immediately communicated his 
    happiness to see us.  As I took his hand he pulled with such effort that 
    he slid himself off his pillow and I had to get the nurse to push him 
    back up.  
    
    I learned something new about my son.  His favorite color is magenta, so I 
    will sport a magenta shirt with his picture at my track meets this summer.
    

    The call to the nurse this morning produced less heartening news.  His temp 
    is  back up.  They are changing their tack to discover the cause.  We will
    see him at noon.  Hopefully it will be down.
    
    However, when we got in to see him at noon he was much better.  When we 
    arrived a squad of nurses were wrestling him into a chair from his bed.  
    He liked it better than the bed and he was more alert than yesterday.  They 
    had gotten his temp down to 98ish, so maybe they are getting on top of the 
    pneumonia.
   	

    When we called in this morning the news was a little bleak.  Ken had a 
    rough night.  His lung problems had grown worse, so they had to up the 
    ventilator support to give him some more oxygen.  Our visit with Ken was 
    in line with the phone information.  Sedation was very high, so he was 
    not very responsive. The doctors are taking aggressive action, so we are 
    hopeful that he will get past that soon.  
    
    Tricia has had her surgery and will be going home today or tomorrow. 
   

    Today was not so good.  The CT scan showed much foreign in his lungs and he 
    was heavily sedated.  We were hard pressed to get any response from him.  
    The docs are getting ready to do a tracheotomy, hoping it will relieve
    the stress on his airway and begin to heal his lungs.  They are still 
    confident about his ability to eventually breathe on his own.
    
    Tricia is home today, but the wheel chair she'll be confined to the next 
    several months limits her activities.
   

    Today was a little better  They are still talking about a Trach, but I asked 
    them about "proning", a rotating bed that is supposed to break up the phlem 
    (thanks Madeline) and they decided to rent one with some trepidation (one 
    about the cost to the hospital and one concerned about the process being 
    hard on patients, especially those like Ken with fractured cervical 
    vertebra).  They promised they would give it a try if one more bronchoscopy 
    produces little result.
    
    Tricia got to visit Ken today.  She is in a great deal of pain and is 
    limited by the wheelchair.
   

    Ken is back with us today, at least inside his head.  Although the tubes 
    keep him from talking and he cannot move anything below his arms, he is 
    alert and and wanting to come home.  It was heartbreaking to see his lips 
    shape the words "Take me with you".  They did another bronchoscopy this 
    morning to clear his lungs more and lowered the sedative level a great 
    deal, so we believe he is well on his way to recovery from the infection 
    and out of the ICU.
    
    Update on the proning:  They could not get a rotating bed -- "the company 
    that makes them has stopped servicing this area".  Memorial Hermann Hospital 
    has not used one since 2005 (no one could give me a reason why).  It is 
    curious, but since Ken seems to be out of the woods, perhaps its not 
    necessary.
    
   

    Ken is pretty much the same today as he was yesterday -- a great relief to 
    both Kathy and me.  
    
    Unfortunately, for me, the grieving process took another turn.  The lyric 
    "you don't know what you've got till it's gone" took on new meaning.  I told
    Ken right before I left him this evening that I really didn't realize how 
    deeply I love my boys until now.  
    
    We have friends, Kathy and Lenny Ericson, who have been going through a 
    similar episode.  Their son was stricken with a dibilitating disease several 
    months ago.  We have expressed our sorrow and sympathy for them, and it was 
    genuine, but you go about your business as usual.  You think about them in 
    passing from time to time and wonder if you should be doing more for them.  
    
    When something this devastating happens to your own child, it immediately 
    takes over more than 99% of your attention.  I knew the word quadraplegic, 
    and I've seen those afflicted from time to time (Christopher Reeve drew the 
    spotlight toward them), but now that word is the center of my universe.  
    I do something normal and a pang hits me, Ken will never be able to do 
    that again! Memorial Hermann Hospital sits right next to Rice University 
    and the sidewalks are always jammed with joggers and walkers and irrationality 
    hits me hard.  I want to scream at them, How can you do that when Ken is 
    in that room and can barely move his arms?




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    Ken was not as good this morning.  He had another bronchoscopy which created 
    lots of pain.  However, By the eight o'clock evening visit, he was recovered 
    to the extent he was yesterday.  
    
    I went back to my Internet research about spinal cord injury.  I looked, in 
    particular for medical trials and possible new treatments, finding there 
    are many hopeful steps being taken now, especially in stem cells therapy.  
    The studies seem perched the verge of a breakthrough.  Maybe, through the 
    grace of God, this (if any) is the time to have such a horrific accident.  
    
    Now, if I can stop feeling sorry for myself long enough to follow up those 
    avenues.
    
    
   

    Phone call at three AM.  Ken's heart stopped -- no blood pressure, no pulse.  
    The staff responded with CPR and he was resusitated quickly, and they expect no 
    adverse results.   They suspected it was a result of mucus buildup in his
    lungs and an early morning bronchoscopy confirmed that.  Our morning visit told
    the short-term tale.  He was very tired and had a lot of pain -- some of which
    was attributed to "phantom" signals received from damaged nerves.  This was 
    another big step in the wrong direction, one that reaffirmed that his life
    is still very much in the balance.
    
    On my way for the 8 PM visit,  I received a scary call from Kathy.  His temp
    was over 103 and they didn't know what was causing it.  When I arrived in ICU
    a very different picture was presented.  He was awake and upbeat, and his 
    temp was 100.7.  The nurse explained that kind of roller coaster ride is 
    common in neuro trauma patients who get pneumonia.  I do not know what to 
    think, so I choose to believe progress will be uphill from now on. 
   

    Today was slow. Ken was very sleepy during our first two visits at 10 AM and 
    noon.His temp was 100.9.  The doctor said they had done another bronchoscopy 
    and the mucus in his lungs is not quite so thick, so his system should be 
    able to eliminate it easier.  By 2 PM he had perked up considerably and we 
    began a nice visit started with a video of his children Alexis and Brendan.  
    He grinned all through it.  Unfortunately there was a crisis with one of 
    the other patients in the pod and we had to cut our visit short.

    At 8 PM I had a nice conversation with him and was able to massage his 
    shoulders.  He has surprising strength in his back muscles -- maybe the
    route to considerable recovery.

   

    Not much change today, except his temp was around normal.  It had climbed to
    a little above 100 by the 8 PM visit.  I had a chance to view the
    bronchoscopy which showed little but frothy congestion in his lungs.  
    No news is good news.
   

    Big change today!  Ken got his tracheotomy and without the tubes in his mouth
    he looks like our son again.  The pain medication and the sedatives they gave
    kept him groggy and not responsive so we didn't have a "conversation", but
    we are looking forward to tomorrow.
   

    We were so happy about Ken's progress with the infection that I forgot to do
    this!  Sorry.  His temp was close to normal all day and the bronch showed
    little congestion.  Although he was very sleepy during the morning visits 
    (the nurse said he had slept very little in the night -- he was angry and 
    upset), by afternoon he was awake and alert.  Kathy was massaging his 
    shoulders and she inadvertently bumped the respirator tube, disconnecting
    it.  Alarms went off everywhere and Kathy nearly panicked.  I reconnected 
    it quickly and we all had a cathartic laugh.
      
   

    Yesterday seems small potatoes compared to how he is today!  At 2:00 the 
    doctor adjusted the trach tube so that he was breathing on his own and was
    able to talk.  He talked volumes in a hoarse voice paced to make up for
    the entire two weeks he had been silent.  He told of a bad night, filled 
    with worry about how he was going to pay for all the doctors mixed with 
    fitful sleep with bad dreams about "Transformers."  The movie must have 
    impressed him.  We took his fears to be the greatest sign that he is 
    indeed on the mend.  Kathy was able to reassure him that his insurance 
    had him totally covered -- Thank God -- and his only concern was to get 
    himself stronger and recover.  
    
    He took his first drink of something not going through a tube directly
    into his stomach -- apple juice -- that he pronounced "Good, but I drank 
    too much."
    
    The doctor was rather upbeat, telling us "soon" he will be weaned off the
    respirator and begin the long rehabilitation process.
      
   

    The pressure release valve when open on his trach tube so that he can talk
    causes Ken to expend a great deal of effort.  He also spent about three
    hours upright in the neuro chair in rehabilitation.  The nurse likened it 
    to the running of a marathon.  He wanted so badly to talk, however, that he 
    insisted on having the valve open when we came in.  Although he seemed to 
    have less energy than yesterday (his temp hovered about 100 all day, even 
    though he was being pumped full of ibuprophin), we enjoyed the conversation.  
    
    During the 6:00 PM vist we received a jolt.  He had asked the nurse for 
    some ice cold Sprite earlier, and he had been sipping liquids, but this 
    time was different.  Abruptly after she opened the release valve and he 
    sipped the soda, his eyes rolled up in his head and he was unconscious.  
    The nurse was galvanized to action, ordering other staff to bring atropine
    and other incomprehensible remedies, while Kathy and I stood stock still in 
    shock.  She later described it as a vasovagal reaction -- an over 
    stimulation of the vagus nerve.  When I looked it up later, it seemed less 
    serious (That's the reaction that causes most fainting spells), but the 
    toll it took on our confidence was real nonetheless.
      
   

    He had three more vasovagal reactions during the night and is really tired
    this morning.  This is clearly more serious than simple fainting spells, 
    because it is manifested with a lowered heart rate and the doctors do not 
    know what is causing it.  They administered atropine and had a "crash cart"
    standing by.  Batteries of tests are being administered to determine 
    the cause.  Apparently, the crisis has passed, because there have been
    no more episodes since about three AM.  He is awake and clear-headed 
    although deeply fatigued.  
    
    He slept until the 8 PM visit. When I woke him, he had sore shoulders, 
    neck and eyes, and he was shivering.  The morphine had worn off and his 
    temp was close to normal, so he was essentially feeling the same as the
    rest of us do when we wake up after a long sleep.  The nurses shifted 
    his position, and covered him with blankets, and I cleaned up his eyes 
    with a warm wash cloth.  He perked up.  I was pleased with how he was 
    feeling when I left.
      
   

    There was another vasovagal reaction last night and and Ken was pretty
    tired this morning.  However, each subsequent visit saw him more awake.
    By six PM he was wide awake as he had ever been since the accident.  Temp
    was 102.4 at noon, but by six it was nearing normal.  He wanted to know 
    about the accident and Kathy told him everything -- this was the first 
    time he could really understand and you could see the sadness in his eyes.
    
    
      
   

    Nothing's ever easy!  His temp was down, but he was so subdued that we
    believed he was sleeping.  When he remained in that state through the 2 PM
    visitation, Kathy began to suspect he was feigning sleep to escape reality.
    Trish arrived for a visit at 4 PM and though he was cool to Kathy and me,
    he began to perk up and had a nice conversation with her.  At 4 PM, 
    although Trish came in again, he had reverted to the torpid state.
    
    Our only conclusion can be that he is finally alert enough to realize
    what he is faced with.  He figured out on his own that he is quadrapelegic 
    and depression has him immobilized.  The nurses confirmed that lay
    diagnosis -- he has had severe anxiety attacks. They have begun giving him 
    Zoloft to combat that.  It hit me -- he is just now going through the
    terrible grieving process that we first felt three weeks ago and are still 
    feeling.  
   

    Either we were wrong yesterday about the extent of his depression or the
    Zoloft they have been giving him is beginning to take effect, because his 
    mood today was very like Wednesday.  His temp is still around 102, but
    perhaps today is sign of steady improvment.
   

    I did not visit Ken in the morning, because I had a track meet in New
    Braunfels.  Kathy did visit him and said he was much the same as he was 
    on Thursday, lethargic and depressed.  I got to the hospital at 6 PM, but 
    could not visit him because they had a crisis with another patient in
    the same room and it was closed to visitors.  When I finally got in to see 
    him at 8 PM, he seemed much the same as Kathy reported, but when I hooked 
    up some portable speakers (We had tried ear buds and larger headphones, but 
    he said they hurt his ears -- I imagined myself with something hurting me 
    that I was powerless to adjust.) he perked up and even sang along with a 
    Beatles tune.  I showed him videos of my jumps (wearing the magenta tank 
    top with his picture) and he gave me a big smile.  I talked to him a
    little about the encouraging research that has recently emerged for SCI.
    His temp was just above 100 and the PEEP on the respirator was at 10 (It
    had been at 12 just three days ago.  The target for getting out of ICU is 5.)
    
    I think he was encouraged some by the time I left.  We'll see tomorrow.
   

    Four weeks in ICU and really little prospect of getting out any time soon.
    He has a different kind of infection, this from the feeding tube into his 
    stomach.  Apparently, the tube being in the same place has knocked his 
    system for a loop causing lethargy and massive swelling of his lower 
    body and his extremities.  His temp is actually close to normal, but he
    will hardly move even to indicate pain.  During my visits, it was with 
    difficulty that he would communicate at all.  We talked of bringing in 
    Alexis and Brenden, his kids -- he desperately wants to see them.  We are 
    trying to arrange that for Tuesday.  They have to be evaluated by the social 
    worker, before they can see him.  It may not be wise to bring them in at all.  
    We know it would be good for Ken, but the problem is whether the kids can 
    handle it.
    
    The respirator PEEP is still at 10.
    

    The doctors say they think they have found the reason for the swelling 
    and lethargy.  There is fluid and adhesions between the lung and the chest 
    cavity that were probably caused by the original injury.  Blood and other
    liquids there provide an ideal growth medium for harmful bacteria.  They 
    began addressing that this morning by inserting a tube through his back
    and into the chect cavity to drain it away, but they believe it will 
    require a more aggressive tactic.  They have scheduled minor surgery
    at 11 AM to insert a tube to suction out the fluid and to break free the 
    adhesions.  
    
    We feel like we are back on square one!
    
    The respirator PEEP is still at 10.
    

    Another setback!  They took him for the surgery, but it required him being 
    able to breathe using his right lung only while they worked on the left.  
    Unfortunately the right lung was not strong enough to do that and they
    had to postpone it until the lungs have recovered some.  They are talking
    a week to a week and a half.  The doctors explained they have every 
    confidence that he will improve soon, since the white cell count is going
    down indicating the infection is being handled by his immune system.  They
    also try to console us with statements that this is quite common in patients
    with this kind of injury and the outlook is still positive. 
    
    Meantime Ken is asleep and massively swollen when we visit.  Its hard to
    paint what we see as "positive." 

    

    One month today!  He is still pretty much asleep, but by our 6 PM visit, his
    eyes were partially open and he acknowledged our questions weakly.
      
    We got a more thorough explantion of the episode in the operating room 
    yesterday.  It was pretty much the same as Tuesday of the past two weeks 
    (Tuesday is not his day.)  When they attempted to stop air flow to his left 
    lung he had an immediate vasovagal reaction.  His heart stopped and 
    they had to do CPR to get it started again.  They are now telling us that 
    things are looking up.  Although the reports or his white cell count were 
    somewhat contradictory -- up temporarily because of Tuesday's episode, but 
    down over all.
    
    The only thing we can do is think positive.
    

    The infection still rages!  After a CT scan, the doctors saw a huge mass
    of "something" below his lung, pressing on his liver and decided to extend 
    the intubation begun on Monday in hopes that the "something" was liquid 
    and could be drained away.  They got to it about 3 PM and the "something" 
    turned out to be 3.2 liters (That's almost a gallon!) of pus that they 
    could easily drain.
    
    Ken is not awake, but we are in high hopes (again) that by tomorrow 
    sometime we will be able to communicate with him.
    

    D-Day.  As it went in 1944, there is much confusion here too.  Ken seems
    to be a little more alert each time we visit him.  While the medics forge
    to a beachhead against the infection, we continue to be positive.  Today
    is Ken's and Tricia's anniversary.
    

    He is improving.  His temp is stable, the swelling is going down and he is
    alert and awake enough to want to watch videos again, something he hadn't 
    since last Saturday.  
    
    Tomorrow is Ken's 35th birthday.  Sing a song for him.
    

    Confusion is the operant term.  At 10 AM and noon Ken was reasonably alert 
    so that we were able to communicate, but at 2 PM he was completely asleep
    even though Tricia came in to see him.  At 4 and 6 PM he seemed wide awake 
    again, but at 8 he was the same as at 2.  During his alert periods two 
    weeks ago we could communicate, with me talking, and he would choose letters 
    from a grid by nodding or shaking his head.  He seems unwilling (or unable) 
    to do it now, and it is next to impossible for me to read his lips, so our 
    "communication" is largely one way.  I did get that he is concerned about
    my traveling to the hospital and my days "out of work."  His smiles and 
    tears convey the depths of his emotions.
    
    Happy birthday Ken.
    

    Kathy and I agree that today is pretty good, with reservations.  His temp,
    heart rate and blood pressure are about the same with the temp a little 
    higher at 6 PM.  The nurses and doctors are all saying he is improving,
    and they are even talking about getting off the ventilator soon.  Dr. Davis
    said the bacteria that has caused the second infection (the one with all the 
    fluid and swelling) was unusual for the lungs (the reason they had difficulty 
    isolating it) but one that is easily controlled with antibiotics.  Our 
    reservations have to do with his level of alertness -- he is in and out
    of sleep and seems to have difficulty at the cognitive level.  Although
    he is moving his lips and seems to understand us, it is not nearly at the
    level of two weeks ago.  Maybe that will be resolved by tomorrow or so,
    but everything seems to take longer than the doctors think.
	

    Nothing's ever easy!  Did I say that before?  Today is Tuesday and Tuesday is 
    definitely not Ken's day.  I think I said that before too.  They are telling us
    a blood clot formed in his leg (because of the immobility) has moved into his
    left lung.  He survived it, so that one is no longer a problem, but the
    likelihood of another one -- bigger -- could migrate to his lungs and cause
    a pulmonary embolism, or even worse, to his heart has radically increased.  
    To combat that they are going to do surgery to install a "filter" in his 
    inferior vena cava to catch subsequent clots.
    
    Doctor Davis seems to think that given Ken's age and physical shape, he should
    have few problems getting past this new bump in the road, but it delays the
    procedure to clear his left lung.  It was luck that the clot was in the left 
    lung.
    
    Ken has been asleep during all visits today.  The PEEP on the ventilator was
    adjusted to 14 and by evening back to 12.  At 8:00 he was a little more
    awake, so again we are being positive.  We just need to cancel all future
    Tuesdays.
    

    Ken was pretty much asleep today.  
    
    One of the doctors (Rossi) had doubts about there being a clot, so they 
    did another CT scan this afternoon and confirmed as much. They will 
    insert the IVC filter anyway as a precaution.  The surgery was scheduled
    starting at 3:30 PM, but they had to postpone it to 10:00 AM tomorrow.
    
    At 8 PM Ken was wide awake, but still not as alert as two weeks ago.  I
    peeked in again at a little after 9 to say good night and he was still
    awake, watching his videos.
    
    The PEEP remains at 12.
    
    This ICU handles head and neck trauma, with new patients arriving on a 
    regular basis.  The waiting room is overflowing with sorrow and despair, 
    mitigated somewhat by hope.  Families of the new arrivals show it more than 
    the oldtimers like me.  I guess we have learned to deal with it better, but 
    I can attest, we feel it no less.

    

    Ken was as awake today as he has been for two weeks.  They did the  
    operation to insert the IVC filter, and he came back almost as alert
    as before.  One more trip to the OR to clean up the adhesions around
    his left lung which they are saying now they'll do next week.  Let's 
    hope it's not on Tuesday.
        
    Kathy said he was pretty much asleep at 8 PM when she went in to visit 
    him.
    
    The PEEP remains at 12.
    
 
    

    I'm writing this entry after my first visit on Saturday morning.  Sorry.
    Yesterday was extremely frustrating for me, not because Ken had lost 
    ground.  Far from it.  Between noon and 2 PM they inserted a "peg" into
    his stomach for feeding, so they could remove the nose tubes, so his 
    appearance immediately improved and I thought with a better view of his
    mouth, it would be so much easier to read his lips.  Boy, was I wrong!  
    I couldn't understand a thing when I went in at 4 PM.  Though he appeared
    to be wide awake and rational, I got nothing and he wouln't readily answer 
    yes or no with a nod or shake.  It was the same at 6 PM and my frustration 
    at my total ineptitude boiled over.  I found myself bawling like a little boy.  
    He did not want to watch his videos or listen to his music.  When I 
    questioned his activity between visits and gave him the only four 
    possibilities I could think of "Watch videos, listen to music, lay there
    and think, or sleep," he steadfastly indicated he wasn't going to do any of 
    those.  He had some other activity in mind and my question: "What are you 
    going to do?" produced a flurry of mouthing, at least two sentences, that 
    was totally incomprehensible. 
   
    At 8 PM I finally deduced the reasons he didn't want to watch the videos nor 
    listen to the music.  The videos were the TV series "Stargate SG1" I had 
    inadvertantly taken home a disk he hadn't finished watching and he didn't 
    want to watch them out of order.  He didn't want the music, because there 
    were some songs that I put on the MP3 player that he did not like and he was
    unwilling to listen to those.  I stayed for a half hour and went through the 
    songs, deleting those he didn't want.  I fell into bed when I got home.
    
    This morning made me feel better.  They deflated his trach cuff, so that he 
    could talk and I think I discovered the reason for my inability to read his 
    lips.  He was delusional.  He first asked "What questions do you have of me?" 
    Then he asked "Is this a crashed aircraft?" and "How many people are on this 
    ship?" The nurses said he had been dreaming about being in intergalactic space 
    (maybe the Stargate DVDs are the culprit here) and his dreams had become
    real to him.  They called it ICU psychosis The book I am reading about 
    lip reading indicates that it is vital to understand the context of speech 
    or lip reading is impossible.  That's probably why I was so incompetent at 
    it.  
  	
    Or maybe I just do not have an aptitude for lip reading. 
 
    

    
    Ken was wide awake this morning and they deflated his trach cuff during both
    the 10 AM and noon visits, so he could talk.  Although in the morning visit
    he was delusional, at noon he was more clear headed.  He recognized that his
    ramblings of the morning were fed by the dreams and was able to have a nice  
    conversation with us.  His brother Dan came in to visit and Ken immediatly
    launched into a normal discussion with him about their families.  At 2 PM
    he was asleep and although I woke him up (much to Kathy's displeasure) he was
    tired and not really interested in visiting, so when he was asleep again at 
    4 PM, we decided to go home and let him sleep.  Ken has improved enough now 
    that we will bring his seven year old daughter, Alexis to visit with him for 
    the first time.  It would not do for him to be sleepy then.
    
    I forgot to say the PEEP on the ventilator was reduced to 10 again and the 
    breaths per minute were reduced from 17 to 15 for the first time.  Those are 
    great indicators that he may soon be weaned from the ventilator.
    

    
    Ken was more alert this morning than he has been since the accident.  This
    is wonderful news!  He was well enough that his seven year old daughter was 
    able to come in to visit with her daddy.  Ken loved it!    Video here
 
    She did too!
    
    So did I!
    

    Video won't play on your computer? Click here and execute setup
    
    NOTE:  Some people had trouble viewing the video (heard only sound--no 
    pictures).  Click the link above and choose save.  When it is finished 
    double click the setup progam and when it is installed try the video again. 
    (You will never have to do this again)  
    
        I read a couple of chapters of Kadakas IV to Ken the rest of the afternoon 
    (I finally have a captive audience,) and he enjoyed it.  Yes Kathy, it was 
    the "bad" chapter.
    
    Today was a really good day for Ken!
    
    But Tuesday looms on the horizon.
     

    
    Ken was very awake today, seemed strong and as well as he has been since 
    the accident.  It didn't go unnoticed.  Dr. Davis has scheduled his 
    surgery to break up the left lung adhesions for 7:30 tomorrow morning.
    The procedure will be more involved than it would have been two weeks ago 
    when they originally wanted to do it because the adhesions have had more
    time to set.  He is confident about a positive outcome.
     

    
    It's hard to believe that I could've been more freightened than I was on 
    May 4th when Ken's accident happened, but I was this morning.  Ken went in 
    for the planned three hour surgery right on time at 7:30.  At 11:15 Dr. 
    Davis came to the waiting room to give his report.  "A little late," I 
    thought, "but it's ok, I guess."  He said, "We did 99% of what we wanted 
    to do when Ken started acting like it was time to go.  I was just finishing 
    up.  It was worse than I thought in there; like a bomb went off, but he 
    came through it just fine."
    
    When I went in for the noon visitation, I was met at the door by the liaison
    who told me that they were in a sort of a crisis with Ken having to do with
    low blood pressure and heart rate, and I would have to wait five or ten 
    minutes for them to stabilize him before I could visit.  I assumed that it 
    was another vasovagal reaction and wasn't initially too concerned.  However, 
    the "five or ten minutes" evolved into thirty minutes while what seemed like 
    platoons of nurses, orderlies and doctors sprinted in and out of the pod 
    doors.  My fear escalated exponentially with each passing minute.  Finally 
    they told me he had been stabilized, and while he was still not past the 
    crisis, they were doing a bronchoscopy and giving him blood and expected 
    him recover well.  The bad news.  They still do not know what is causing 
    these episodes.
    
    It wasn't over.  Dr. Davis came to the ICU and examined Ken.  He was still
    bleeding and it was decided to return him to the operating room to stop it.  
    They had transfused 10 units of blood (almost his entire supply.)  We got 
    to see him on the way back.  He was awake and alert and as I ran along 
    side of the bed down the hall he mouthed "I love you" to me.
    
    It's still not over!  After two hours in surgery, Dr. Davis brought the
    tale back to us.  The area of the left lung he had peeled from the chest
    wall was gushing blood.  The area was too large to respond to a clotting 
    agent, nor was it quenched by a netting placed over it.  The next step was 
    to remove part of the lung back to a narrower area with less propensity to 
    bleed.  That was the removal of 15% of one lobe of his left lung.  In the 
    process Ken has now been transfused with 21 units of blood.  Back in the 
    ICU, a crew of 3 to 5 nurses and 2 doctors are working furiously to regulate 
    his temperature and stabilize him.  He is awake and aware, but in a lot of 
    pain, and because of the frozen plasma they are giving him, very cold 
    despite the heating packs that engulf his body.  The ventilator is doing 
    pretty much all of his breathing for him (FiO2 100%, breaths per minute 
    24)  The PEEP, however is still on 10.
    
    The good news.  He survived another "terrible Tuesday" and has no future 
    surgery planned.
    
     

    
    Today (this morning at least) is like a breath of fresh air.  They have 
    moved Ken's bed so its at the corner of the building with windows on both 
    sides and pleasant light pouring in.  His color has returned and the 
    ventilator setting have been changed considerably.  Although the FiO2 
    (oxygen level) is still 60%, the breaths per minute is down to 16 and the 
    PEEP is now at 8.  He was awake, alert and watching a video when I left.
    
    My brother, Nick is coming in from North Carolina this afternoon, so I
    will visit Ken at noon and go to the airport right after. 
  

    
    It's STILL not over!  This morning we were told that his left lung was 
    "all white" in the chest xray, meaning it was not getting any air.  They 
    did a bronchoscopy and proudly displayed a bottle filled with bloody phlegm
    that they had suctioned from him, hoping that was the reason.  By the noon
    visit they had indeed determined that was the problem and he was breathing
    easier.  However, he is very lethargic, and we again find little positive 
    to hang on to.  The PEEP is back up to 10.
    
    The afternoon was progressively better, until by 6 PM he was alert and
    clearly enjoyed two visits from Tricia and Alexis.  We left him watching 
    Forrest Gump.
    

    
    Ken was in a lot of pain in his shoulders this morning, so the nurse gave 
    him valium and some pain killers.  The drugs put him into a semiconscious
    state.  He acknowledged our question, but he was mostly sleepy.  We let
    him sleep after being sure he was aware we were there.  At 4 PM and 6 PM
    Ken was great.  Wide awake with a little pain, but alert just like yesterday.  
    

    
    His left lung collapsed this morning because it had filled with bloody phlegm
    from the surgery, essentially plugging up the airway.  When we visited at 
    10 AM Dr. Rossi did another bronchoscopy and we watched her clear it 
    effectively.  As the damage of the surgery heals, there should be less and 
    less of a problem with that.  After the procedure, although he was in a 
    great deal of pain, he was awake and alert.  Even during the bronchoscopy,
    he was alert to his surroundings, giving me a great deal of solice and hope 
    for eventually leaving the ICU.  His shoulders are in a great deal of pain 
    and he believes that he has another infection.  If that's true, I hope it's 
    minor.  We are being told that he will soon be moved to a private room.  
    Still ICU, but I hope with more liberal visiting hours.  As the afternoon 
    progressed, Ken became more and more interested in visiting.
     
    

    
    No bronchoscopy this morning.  Dr. Rossi showed us the chest xrays from 
    yesterday and this morning.  His left lung was much clearer today.  He was 
    much more alert this morning than he has been and maybe because of that
    he had a great deal of pain across his shoulders, his chest, arms, neck,
    head and something new, his lower back.  He mouthed to us "I hurt so bad, 
    I can't think."  The nurses gave more pain medicine and as the day wore 
    on the pain was less intense, but it took a lot out of him.  At 4 PM, he
    asked us not to come in to visit because he just wanted to sleep.  I 
    believe the pain has a couple of good aspects.  First, although he cannot
    move or control much of his body, feeling seems to be returning somewhat, 
    indicating that his spinal injury is not complete.  Where there are signals
    returning to his brain, might signals the opposite direction have a better
    chance of recovery.  Second, it makes me think that the pain has always 
    been there, but the state of his consciousness has been dulled so it wasn't
    so intense.  
    
    I know Tuesday's coming, but I feel like now it will be just another step
    in the right direction. 
    

    
    No bronchoscopy again this morning.  Although the nurse thought there might
    be, chest xrays showed little change so they decided to wait.  Ken is still 
    in pain, but its not as bad as yesterday and it's clearly a result of bed
    stiffness and chest soreness (from the broncheoscopies).  It is clear now 
    that Ken does have feeling all the way to his toes and when I told him that
    was good news, because where there is one-way communication, two-way should 
    be easier to recover, he replied with confidence "I am going to walk again!"
    
    Good friend, Betty Boehnke, told me last week that my entries are so much 
    longer when there is bad news than on good days.  That's the way it seems 
    to go in life.  Maybe good news is boring, but I can tell you, that's not
    how I feel about it.  In fact, the up times are huge multiples of the others
    inside.  I will make it a point to make these longer on good news days.  Even
    though I am so confident that tomorrow (Tuesday) will be a reversal of 
    those previous Tuesdays, I'm not even going to mention it.  (Oops, I just did.)
    
    With each visit, I have read more of Kadakas IV and I think I am enjoying 
    watching him more than he is listening to it.  I hope that doesn't mean the 
    book is bad. 
    

    
    Really happy!
    

    
    Yesterday was pretty good from Kathy's and my perspective because we seem
    to have broken the cycle of terrible Tuesdays and the last three days he has been
    as alert as he has been since the accident, but to Ken maybe not so much.  He is 
    in terrible pain throughout his body.  I described it Monday as "result of bed
    stiffness and chest soreness", but it is more than that.  My assessment was of
    wishful thinking, rather than information from Ken or a medical evaluation.  
    He describes it as a terrible aching that continues all the time.  The nurse
    calls it spasms.   This link indicates it can come from many different sources.  
    His description of the pain seems to match a Musculoskeletal cause.

        "This type of pain ...  occurs in parts of the body like the bones, joints, 
        and muscles. Musculoskeletal pain is usually worsened by movement and eased 
        with rest. It can generally be described as a dull or aching pain ..."
        
    A new drug for treatment is pregabalin from Pfizer Inc.   The bad news:
    They are not using it for Ken, and the doctors are nowhere to be found.  The
    nurse says there are issues other than just pain that the doctors must consider.  
    Wait a minute; IT'S THE PAIN!
    
    Good news!  A representative from the hospital rehabilitation center  TIRR 
    visited with me today indicating that it could be as little as a week away for 
    Ken to be transferred there to begin about a month of rehab.
    

    
    Today started out like yesterday ended.  Lots of pain!  The doctors are giving 
    him amitriptyline that two doctors catagorized as "like pregabalin" and fentenyl
    I'm not a doctor, but I can read and I don't don't see anything describing the
    two as being similar.  In fact, I found one web site that described them as 
    being significantly different.  I can't find any clinical trial comparing the
    two and a couple that say there have been none.  Since Ken's pain eased some 
    at 2 PM and later in the afternoon, I won't press the issue yet.
    
    The BIG news is there is remarkable success with the ventilator weaning process.  
    Yesterday the schedule was two hours on it and two hours off (not really 
    totally off; they call it CPAP) and today it was four hours on and four off.
    
    The nurse Ken has now is emphasizing rehab in his arms, something the others
    let lapse during his crises.  It is obvious that his biceps have atrophied
    some during that period, because he is noticeably weaker.  Getting that back
    will be an effort, but Kathy and I are really upbeat.
    

    
    Ken has been getting a great deal more physical therapy in the past two days
    and it is already helping.  That he has improved is also clear because he is
    finally getting actual food.  Soft, of course, but that should lead to more 
    normal meals soon.  Something I missed reporting yesterday:  He adamantly 
    confirmed that he "will walk again."
    
    On May 12 I recorded "As I took his hand he pulled with such effort that 
    he slid himself off his pillow and I had to get the nurse to push him 
    back up."  After a month and a half of the ravages of infection and almost
    complete inactivity, his strength is but a shadow of that.  When we exercise
    his arms, we do so with no resistance and still it is slow and feeble. But
    it is something, and we must be satisfied with that and go from there.
         

    
    The pendulum swung a little back to the left again this morning.  Ken had 102
    temp and was consequentially not very good company.  Unfortunately it led to 
    a comedy of errors (to him it was not a joking matter.)  He was very warm, so
    of course, the thermostat in the room was stuck high and the cooling blanket 
    placed under him did not work.  When I came in at 10 AM, the nurse was trying 
    to get maintenance to fix the thermostat and Ken was sweltering.  I immediately 
    looked around to find some washcloths or towels to wet and place on him.  There
    were none so I devised a field expedient (Army talk for jury rig) and got about 
    an inch of paper towels wet and draped them on his exposed head and arms.  It 
    made him feel better, but when the doctor came in his first comment was "Are 
    you trying to mummify him?"  The nurse had sent a request for a fan that never
    materialized and finally got some real washcloths to replace the now crumpled
    papier mache the paper ones had deteriorated into.  With ibuprofen and a fixed 
    cooling blanket that combo finally brought the temp down to normal.  The fever 
    was caused by renewed infection which turned out to be a mutated strain of the
    last one, so they should get it under control quickly.  Meantime we have to 
    wear masks when we visit.
    
    Good news (maybe) and bad news.  
    
    The bad news is the PAIN!  Everything hurts!  There is the continual and 
    constant pain in his shoulders, arms and neck that I described above as 
    Musculoskeletal AND now it is certain he has Segmental pain.  
    I touched his right foot slightly with my hand and it sent him into agony.
     This link describes those classes of PAIN.
    
    The good news is that he has movement in both of his legs.  It may be hopeful
    exaggeration, but I watched him raise his left leg an inch above the mattress.
    It may not have been an inch, but it was definitely movement, and he said he
    made it happen and had done it before -- accidently -- while straining to raise
    his left arm.  I also watched him move both legs several times in reaction to
    the nurse working with his catheter tube (who wouldn't?)  What that means in 
    progress toward a miracle recovery, I don't know, but I do know it's better 
    than a poke in the eye with a sharp stick.  
    
    Ken is thinking miracle as well.  He told his wife Tricia not to clean the 
    garage, because "I will do it."
    
    The PEEP was briefly at 8 with FiO2 35%, but Ken complained it was hard to 
    breathe and the PEEP was upped to 10 again.
         

  
    We have been so focused on Ken that both Kathy and I forgot today is our 40th 
    anniversary (Wow! 40!)  We got to celebrate with Ken, knowing that there is a 
    little more progress with him today.  The pain is still there, but not quite 
    as bad and the fever is down so he is not quite so hot.  It is confirmed that
    he can make his legs move.  I made him demonstrate several times to be sure. 
    It hurts, so he wasn't too happy with me.  We are getting better at reading
    lips, but I sure will be happy when they feel like its ok for him to talk 
    again. 
   

  
    The doctors have prescribed a new pain medication for Ken neurontin.
    The pain med business is whacko.  Phizer the manufacturer of neurontin was 
    fined 430 million for illegally influencing doctors (parties and cruises)
    to prescribe neurontin for non FDA approved symptoms.  This was a drop in the 
    bucket since the company sold 4 or 5 billion dollars worth of the drug. 
    
    However, neurontin has been in existence since the eighties and has relieved 
    the neurologic pain of many people.  The question is still:  What about 
    pregabalin?  Phizer makes that too under the name Lyrica.  It was approved in 
    2006 and info about its relative effectiveness and side-effects is confusing. 
    comparison
    
    It's a paradox.  As the respiratory issues get resolved and he becomes more 
    alert, the pain grips his entire body in a grim icy hand.  He describes it
    as a dull aching pain in his neck, shoulders and back.  When someone touches
    his leg, even slightly, it sends an electric bolt through his entire lower 
    body.  It may be that the pain was always there, but masked by the other.  We
    understand this is a necessary step forward in the healing process and he is
    recovering.  No consolation.  His pain is pretty unbearable right now.
   

  
    Sleep must mean little or no pain, or so I hope.  When I looked in at 10 AM,
    Ken was so peacefully sleeping, I tiptoed out and let him continue.  At noon
    a nurse was working on him, and encouraged by his slight wakefulness, I got
    his attention enough to answer my inquiries about his pain (I hope I didn't
    remind him and thus bring it back.)  He said his pain was about the same, but
    it had been better at times through the night.  He had slept better, but he 
    was clearly not slept out.  I began reading another chapter of Duty, but
    it wasn't long before he was oblivious again.  Hopefully, it was not a comment
    on the excitement of the reading.
    
    I came back to visit him at 8 PM and he was wide awake AND he says the pain 
    is a great deal less.  I'm encouraged.  And today was Tuesday!
   

  
    Much better today!  Ken is in less pain and is actually able to think clearly.  
    The nurse deflated the trach cuff so he could talk (and the sign admonishing 
    those who would deign to deflate it is gone) and we had the best conversation.
    He related at length how angry he'd gotten with me yesterday when I couldn't
    read his lips, and we talked about the books I had been reading to him.  Best of 
    all, he told me how he had been able to move the fingers on his left hand 
    some.  When he tried to demonstrate, however, though my will made me see a
    movement, it was so slight that it could have been my wishful thinking
    only.
    
    Meantime the ventilator PEEP is 8 and the FiO2 level is 40%.
    

  
    Still good today!  He's had some home cooked meals, so he is starting to
    eat solid food, something he got used to not having because of the feeding
    tube.  He does not like the hospital food at all and with no hunger, he 
    chose not to eat it.
    
    The ventilator is most often now set on CPAP (him doing most of the work.) 
    Still no word on when he'll be transferred to TIRR for rehab, so it'll
    be probably after the long weekend before that will happen.
    
    PEEP is 8 and the FiO2 level is 40%.
    

 
    Two months in ICU today and the fourth of July.  Much positive, because Ken
    is finally headed in the right direction toward many months more of recovery.  
    The long inactivity has taken its toll.  His arms are still much weaker than 
    a month ago and are painful because of the relative strength of certain 
    muscles compared with those that normally counter them.  Biceps, for example 
    are much stronger than his triceps, making the arms want to curl inward.  He 
    cannot fully extend either arm.  My attempts at rehab are making some inroads,
    but there is a long way to go.
    
    I believe the pain management effort, while he still hurts some, is showing 
    a modicum of success.
    
    

 
    Xrays show his lungs (especially the left that had so much problem) are 
    improving so well that Doctor Davis says he can take the tubes out, one
    tomorrow and the other on Monday.  He is eating much better, but we had a
    slight scare.  I was feeding him chicken noodle soup and something (a 
    noodle or a chunk) went down the wrong way causing him to choke.  We called
    for the repiratory nurse and it was quickly resolved, but it was a harbinger
    of something that we will constantly have to deal with unless he gains some
    control over his chest muscles and can cough things like that up.
    
    I got him a pair of "stress" balls he wants to use to strengthen his fingers.
    He thinks he can squash them slightly, but we still can see no movement.
    

 
    Ken continues to improve.  Today, Doctor Davis removed one of the two tubes
    that were draining fluid from his lungs.  Tomorrow he will remove the other
    so we expect that sometime this week he will move to rehab.  He gets less
    and less help from the ventilator, so we believe he is finally on the way 
    to recovery.
    

 
    Another step backward.  So far it seems to be a small one.  The chest 
    xray to determine the results of the tube removal showed that Ken's left lung
    had collapsed "a little."  Consequently, they did another bronchoscopy and
    are delaying the removal of the other tube until tomorrow.  The meds they gave
    him for the bronch knocked him for a loop and although he was recovering his
    alertness by 6 PM, earlier he slept most of the day.  
    
    I am wrung out.
    

 
    So far, today is good except four year old grandson Brendan chose to test 
    grandpa -- and won.  I only had to watch him once, so I consider it a good 
    day.  I think he just wanted to confirm it's terrible Tuesday.
    
    Ken had the other chest tube removed and is doing well on the lowered
    ventilator settings, so we are expecting the move to rehab to be soon.  
    However, I am less than confident about his strength recovering very soon.  
    That appears to be actually reversing.  On June 27, I said his arms were 
    weak. It seems to me that he is a little weaker now than then.  Certainly 
    there is no improvement.  That may have been a result of the terrible pain.  
    

 
    Something new.  Ken is going to need continued broncheosopy support, so 
    he will not be going to TIRR for rehab, at least until his lungs are 
    stable.  Instead, he will be transferring to Kindred Hospital
    right next door to Memorial Hermann.  There, they can continue to give
    him lung support and begin his rehab process.  This is clearly another
    bump in the road to recovery.
    
    Meantime, Ken was very subdued and sleepy today.
    
    The pain is back!  I don't know how I knew, but as I entered his room
    at 8 PM, I knew Ken was hurting.  There was a pall of oppression 
    hanging in the air.  Maybe there is some sort of psychic connection 
    between father and son.  I knew it, and he was clearly aware of my 
    certainty.  The only question was of degree, and he filled that in quickly:
    "I hurt more than I have since the accident."  My reaction was irrational
    and immediate.  I had to connect with him and somehow relieve the terrible
    pain.  I massaged his shoulder as I yelled for the nurse (it turned out
    she was aware already and was in process of bringing in his meds.)  
    Thankfully, it wasn't long before the medication took effect, but it
    was a glaring reminder of what the future might bring.
    
    

 
    Good news! We discovered a Kindred Hospital within ten blocks
    or so of Ken's house and they have space for him.  That will cut the 
    fifty mile one-way trip for Kathy and me to around 20 miles and no $10
    a day parking fee.  The visiting policy is much more liberal as well.
    Instead of every two hours for twenty minutes (in truth we had fudged 
    that considerably in recent weeks) we can visit any time except between
    six PM and eight PM.  In addition, Tricia can stay the night. 
    
    Ken was better today, but with the increasing dosage of pain medication
    come the associated drowsiness.  Discussions with him are interspersed 
    with reality and half remembered dreams making it difficult to understand
    with lip reading.
    
    There is no dodging the fact that the move to this long-term care facility
    instead of TIRR (the rehab hospital we had been told about from the
    beginning) means his recovery is not nearly as rapid as originally
    expected.  On the other hand, maybe this is exactly what he needs.
    

 
    Today is much better.  Knowing he was going to have yet another bronchoscopy,
    I was a little worried at 10 AM when he was obviously asleep, thinking he'd 
    already had medication in prep for that.  I only said his name twice however,
    and he seemed to be wide awake.  At noon, I read some more to him.  The bronch 
    had removed a great deal from his left lung and the medication did not seem
    to blunt his alertness at all.
    
    The best time was at 2 PM.  Ken's boss, Keith, who is over all the Papa John's
    franchises in the Houston area came in for another visit.  He also brought
    along two of Ken's coworkers, Lynn and Wanda.  They were great!  They brought
    Ben and Jerry's milk shakes and cheered Ken up with a song and dance routine.
    
    Ken's trach cuff was not totally inflated so he could talk very clearly and
    I could tell it did not tire him out.  Everyone had the greatest time!
    Especially Ken.  He really enjoyed talking shop.  Most telling was his 
    spirit.  When Keith mentioned the name of the gal who is now manager of
    Ken's store, Ken said "Tell her not to get too comfortable.  I'm coming back
    soon."
    
    I was wrong.  It did tire him out, but it was worth it to see him laugh.  He
    was pretty tired at 4 PM, but he woke up some at 6 when Kathy came in to visit.
    We just looked in and let him sleep at 8.
    

 
    Ken's brother, Dan came from Austin to visit and Ken was glad to see and visit
    with him.  The nurses had him sitting up in a neuro chair and lowered the 
    ventilator cuff so he could talk.  They had a nice discussion, but it tired 
    Ken out.  The "chair" is really tough on him and it had been nearly a month 
    since he'd last been in it.  He just wanted to sleep the rest of the day.
    
    
    

 
    Today it's 6.  That is the ventilator's PEEP setting, close to the point 
    where Ken should be strong enough to not need the breathing help.  His
    appetite has still not returned, but since they are still feeding him
    through IV at night, maybe he just has not been hungry enough for the
    hospital fare.  I've tasted it and concluded it is easy to dislike.
    
    He was in the torture "chair" again today.  Boy, does it tire him out!
    
    

 
    Ken slept!  He had a rough night with the ventilator on a lower setting,
    and with the mucous buildup, his left lung partially collapsed this morning.  
    With the extra medication for the bronch and the lack of sleep last night,
    he slept until the 6 PM visit.  He was still quite tired then.
    
    Bronchoscopies are going to be in order for a while.   
    
    We expect him to be moved to Kindred hospital tomorrow or Wednesday. 
    
    

 
    He slept enough yesterday that he was wide awake today all day.  Because 
    of slow communications between the hospitals and the insurance company, the
    move to Kindred Hospital was put off until tomorrow.  Just as well, since 
    today was Tuesday.  I know its superstitious to continue to hammer on the 
    "cursed Tuesday" syndrome, but I couldn't help thinking about it from time
    to time.
    
    Several times his trach "cuff" was deflated so he could talk and we had
    nice conversations.  It did not seem to tire him out nearly as much as 
    previously even though the PEEP continues to be set on 6.
    
    

 
    Moving day.  Ken had a rather sleepless night, so he was quite tired this 
    morning.  Hopefully, that will not be a problem for the move.
    
    Always a problem.  He is now in his new room.  It's quite a bit nicer --
    there is actually a window in the room, and visitors can stay much longer.
    Unfortunately, when something can go wrong, it will.  That's somebody's law.
    The ambulance crew accidently pulled Ken's peg (the feeding tube in his
    stomach) and the new medical staff scrambled to fix that.  Consequently
    other less important things were put on hold.  His pain medication had to be
    reapproved by the receiving doctors, so Ken has been waiting in pain for
    quite a while.
    
    
    

 
    Much better today.  Now that the medication routine has settled down, he's
    had a chance to appreciate his new room.  He likes it.
    
    Junior from Papa John's was on his way in to visit with Ken as I was walking 
    out.  Unfortunately, visiting hours are always, EXCEPT 1:00 PM - 3:00 PM and
    6:00 PM - 8:00 PM, and it was 1:00 PM, so Junior didn't get to visit.  I told 
    Ken you had come in, Junior.  He was very appreciative and he thanks you anyway.
    
    Tricia had an MRI of her left knee and the dye they injected her with was 
    quite painful.  If Ken was still at the Medical Center, she would not have 
    been up to visiting him, but only ten blocks to travel made it easy for her to 
    get there.
    
    
    

 
    We are initially impressed with the Kindred Hospital Physical Therapy/
    Occupational Therapy programs.  If they follow through, it seems like
    the best way to get Ken headed back to functionality.  
    
    Our experience with Kindred did not start out well.  A woman in the
    waiting room of Memorial Hermann told us a horror story about her uncle
    and Kindred Hospital.  It seems that he was doing well at Memorial 
    Hermann, but when he was transferred to Kindred, he immediately began
    to go downhill.  She followed that up with a second hand report that
    when she had asked a "nurse" about Kindred, she just rolled her eyes.
    
    Not knowing anything, despite the doctor's recommendations we nearly
    panicked.  Our doctors and nurses reassured us, however.  Still when
    we arrived at Kindred and the peg had been pulled and the nurses could
    not give pain medication for three hours, it was hard to keep an open 
    mind.
    
    Ken had little sleep last night, and so was very sleepy during the day.
    When Tricia and I came in at about 3 PM the rehab people were either 
    doing their thing or solicitously explaining to us what they are going
    to do and what we can do to help.
    
    

 
    I went to a pole vault meet in New Braunfels, Texas today, so I didn't get
    to visit with Ken until 3 PM.  This gave Kathy a chance to have a few hours 
    of one-on-one time with Ken.
    
    Yesterday, Ken told me he wanted to get his head shaved by me.  I said he
    had to get his wife's and mother's okay before I touched a hair on his head.
    After negotiating with them, he decided a "high and tight" Marine cut would
    be sufficient, so I finally agreed.  After some soul-searching, and a few 
    shakes of the head from Kathy, I decided I would make a lousy barber, 
    so I contacted a professional who will cut it on Tuesday. (On second thought, 
    I'd better change it to Wednesday -- no sense tempting fate!)
    
    He has settled in nicely at Kindred and we are feeling much better about it
    as well.  Good friend Polly told Kathy that her mother was a former patient
    and she couldn't have been happier.  I am impressed with most of the staff
    here.  
    
    More good feeling!  Good friend Dr. Bill Harbour told me that Dr. Venkatesh, 
    Ken's primary physician here, was his first choice when he needed to refer
    a patient to a pulmonologist.  He says he's really good!
    

 
    Sorry!  I finished this yesterday and forgot to upload it.
    
    Not much happened today.  Ken was able to talk this morning because there
    was a little leak around his trach cuff.  Although that's not such a good 
    thing for someone trying to strengthen his lungs, I'm told, it surely was 
    nice to clearly understand him.  
    
    Ken's friend and coworker Bob paid a visit this morning.  It sure makes me 
    proud to hear how much the people who work for and with him think of my 
    wonderful son.  That includes his bosses.  I have loved him as much as 
    anyone can another for his entire life, but having others reinforce that 
    is the best emotional high I can imagine.
    
    He is sleeping this afternoon and I am sitting here watching and letting
    him.  In an hour, I will bring Tricia and the kids in to visit.
    
    Kathy says I have been neglecting to mention Tricia and her, so 
    here goes.  Tricia had fractures of her right foot and other "soft tissue"
    injuries to both knees.  She had previous injuries to her knees and this
    accident did her no favors.  The foot was the first to undergo surgery and
    though it was successful, she has a four-year old boy who likes anything 
    with wheels.  A wheel chair is like heaven to him.  Tricia had to chase
    him down for it and in doing so, she sprained the ankle and broke a toe on 
    the same foot.  The opposite (least injured) knee has had arthroscopic 
    surgery and she says it feels better already than it has for years.  The 
    other knee is not so easy.  She needs major reconstructive surgery on it.  
    The first step in that process was the injection of a dye into the joint 
    to clarify the MRI.  That extremely painful procedure was done on Thursday.     
    
    I guess you could say she is progressing, but not easily or painlessly.
    

 
    Ken slept deeply until 3 PM when I woke him up.  We did the physical therapy
    twice and it may be wishful feelings, but it seems to me he has some muscle 
    power in his legs, but very slight.  We'll keep working it.
    
    The big news is Tricia.  She had an evaluation by the surgeon for her foot 
    and the preliminary bad news that she might have to undergo more surgery on
    it turned out to be just precaution.  She not only does not need more surgery,
    but she does not have to be in the wheel chair all the time.  Now they can
    focus on the other knee.
    

 
    Kathy an I are really concerned about how much Ken has been sleeping.  Today
    he was out of it nearly all day and even when he was "awake", he was only half
    conscious.
   

 
    Just when you think things are settling down, every sense is pounded to mush by
    the vast evil intelligence (or totally mindless whim) of the universe.  Alyssa,
    the new wife of my brother Nick's son Brent was in a horrible automobile accident 
    and sustained massive head injuries.  She is not expected to live.  
    
    Brent and Alyssa were married in January of 2008.  
   

 
   We may have tracked down the reason Ken is so sleepy.  He hasn't been eating well,
   so the doctors prescribed an appetite stimulant, which he had been given since
   he's been at Kindred.  The nurse checked the side effects of the medication and
   guess what?  One of them can be drowsiness.  His appetite has actually diminished
   because he is so sleepy, so they have stopped giving it.  He is a little more
   awake this morning, so it may be working.  We'll see.  
   
   Kathy had a conversation with him that may have shed more light on the appetite 
   thing.  Because of the reduced muscle strength in his chest, he cannot cough well, 
   so he is in fear that he might choke on solid food.  He told her he has been 
   hungry, but was afraid to eat.  They are now adding more nourishment through his 
   stomach peg to address that.
   
   He slept some this morning, but by this afternoon he was awake enough to listen
   through three more chapters.  I actually went to sleep before he did. 
   

 
   Another "no confidence" vote from me.  About noon, Ken was sleeping and a nurse 
   aide brought in a food tray, saying to me with concern, "Would you like to try 
   to feed him?  I tried this morning and he wouldn't eat."  Ken woke up some and 
   was eating, seeming to have a very good appetite when in came another nurse, 
   frantic.  "Why are you feeding him?" she gushed looking around fearfully.  "The 
   doctor is going to do a procedure and he shouldn't eat before it."  Indicating 
   Ken, she went on, "Didn't he tell you?"
   
   They had scheduled him for a broncoscopy for the morning, but when I left at 6 PM
   it still hadn't happened.
   
   Significant step this afternoon, however!  Ken was disconnected from the 
   mechanical ventilator for the first time.  He had been "breathing on his own" on 
   a setting called CPAP for more than six hours at a time, but he was really still 
   getting assistance from the machine.  Now he has a tube that passively supplies 
   him with oxygen, but he has to do all the work.  I was told that if he can avoid
   respiratory distress for three or four days,they will cap the trach and place the 
   oxygen supply in his nose.  He will be able to talk!
   

 
   I competed in the Quintana Beach Vault Meet today and was unable to visit Ken 
   until 8 PM, but Kathy was there this morning.  She reported that he was still 
   off the mechanical ventilator and though he was quite sleepy and felt difficulty 
   in breathing, he was fine otherwise.
   
   When I came in it was a different story.  He was back on the mechanical 
   ventilator, although set on CPAP, and was having mild delusions.  He could talk 
   quite well around his trach cuff and he expressed concern he had lost his and 
   Tricia's wedding rings.  When Tricia had ungone surgery in the past, he had held 
   her ring until she was out and he thought the same was true now and, since he 
   didn't have them, it was a logical leap that they were missing.  My reassurance 
   gave him considerable relief.  His dreams intruded on reality once again.  He 
   insisted that there was a "bunch of crap" on the floor of his room and that I
   should replace the metal plate over a grate there.  After I raised the top of 
   the bed so he could see for himself there was nothing on the floor, he expressed 
   his fear that he was "going insane" and confirmed to me his descent into 
   depression.  He told me he wanted to see a psychiatrist and get back on the
   antidepressant medication.  I'm not certain if my logic that questioning
   his sanity under the circumstances is a perfectly sane reaction, made him feel
   any better.  If a person is truly insane, he does not know it.  The psychiatric 
   counselling and antidepressent medication are scheduled nonetheless.
   
   Tricia and Paul came in to visit and we pooled our confusion.  The bronchoscopy 
   still has not been done and we wondered why Ken was not allowed to eat solid food 
   or drink anything.  The speech therapist first insisted that any thin liquids 
   be thickened before he drank to lessen the possibility of choking if they enter 
   the trachea rather than the esophagus and still had a warning sign posted 
   behind Ken's bed.  Again a response to the weakness of his cough response.  
   Somehow the "no thin liquids" and the "no solid food before the bronchoscopy" 
   got translated into "no liquids and no solid foods."  Since we were confused, 
   we managed to get the nurse on duty so confused that she finally decided to call 
   the doctor who rescinded all orders except the "thicken" edict and Ken was 
   allowed his first cooling ice water (thickened) in 24 hours. 
   

 
    This morning began yet another adventure.  Ken's heart rate was way high -- 125, 
    and kept setting off the alarm.  He said it was because he was having difficulty 
    breathing.  Even though the ventilator was set to deliver assist/control to
    provide total support for him and his blood oxygen level was consistently at 99
    to 100 percent, he insisted that "it doesn't sound right."  The alarm kept going
    off when the heart rate reached 126 or 127 and it took awhile for him to calm 
    down and relax.  With a dose of valium and forced relaxation it finally settled
    down to 120 or so, still high, but better. 
    
    I had to leave because the hospital disallows visiting between 1 PM and 3 PM, 
    and when I returned I was gratified to see his heart rete was down to 105 or so.
    After a few minutes, I was startled by the alarm again.  This time it was not 
    the heart rate, but his blood pressure.  It had shot to 192/105.  Within ten 
    or fifteen minutes it was down to 170/80, but the heart rate began to climb 
    again to about 115.  It remained at that level for the rest of the day.  They 
    tell that these episodes are common with SCI, because the natural regulatory
    agent (the nevous system) is disrupted.
    
    We found out this evening that Alyssa was declared brain dead on Thursday 
    evening, but because she had recently declared herself as an organ donor,
    they artificially sustained her body until the organs could be harvested.  I 
    had been avoiding calling about her, desperate to avoid any further bad news.
    Brent has been closest to Ken of all his cousins because their ages are similar, 
    so we have avoided telling him about Alyssa.  I apologize to anyone who might
    have been offended by my Wednesday entry.  I just spouted my feelings.  Brent
    put it better:  "It just sucks!"
    


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    More problems with blood pressure.  When I came in at 10 AM, Ken was awake and
    seemed to be alert.  He had pain in his shoulders and neck, but not so bad that
    he didn't want me to read to him.  I had read several chapters when the alarm
    went off indicating a BP 190/99.  He went to sleep soon after that.  His heart
    rate is below 100 and he seems to be relaxed.  The nurse told me he had 
    undergone a chest xray earlier and had medicated him preparatory to an CT scan 
    to be done by this afternoon.  They do not seem too concerned about the BP; 
    only reinforcing the notion that SCI patients often repeat that cycle.
    
    Kathy put the question we both have been worrying about bluntly to the doctor:
    "Is it possible that he won't ever be able to get off the respirator?"  His 
    answer was a hem and haw -- something like "You never can be certain with SCI 
    patients..."
    

 
    A breakthrough!  Ken can move his left arm enough that he can scratch his face.
    Today was good overall, but that minimal athletic skill is monumental to me.  
    I have read that SCI patients do most of their recovery within the first 
    year after the accident.  But with his slow start (average hospitalization of
    SCI patients is four weeks -- Ken has taken almost three months already) I can 
    hope he will make up for lost time.
    
    

 
    Sleepy time,  They did another CT scan at the request of the original neuro-
    surgeon and the medication has him pretty well drugged.  The CT scan was 
    followed up with by xrays, again of the neck, and after that he woke up
    and became as alert as he has ever been.  The physical therapists have added
    some paraphenalia for his legs and arms to maintain flexibility.
    
    Kathy and I are going to Oregon tomorrow for my fiftieth high school reunion,
    and will not return until Sunday evening.  We will get updates from Tricia
    and the ICU staff, so if I can get wifi I will continue the entries.
    

 
    We visited with Ken for about 5 minutes on the way to the airport.  Although
    early -- 7 AM -- he was awake, hopefully a prelude to a good day.  He still
    feels great difficulty breathing, but since his blood oxygen level is always 
    99-100 percent and he feels the same whether or not the ventilator is providing
    support, we (and the doctor) believe the difficulty is produced primarily
    by anxiety.  But the feeling has persisted for several days now ever since
    they floated the trial balloon to remove the machine last Friday.
    
    On the flight I finally felt a little relaxed from constantly thinking of Ken.
    As I listened to my mix of my favorite oldies, the mariachi harmony of Bud and
    Travis in "Cielito Lindo" brought it all crashing back.  While they were teens 
    my sons chided me relentlessly about my favorite singers (Bud and Travis were
    and still are my favorite) being so obscure that my taste had to be a little 
    suspect.  That memory filled me with images of Ken before.  We will be 
    traveling through Eugene, Oregon this afternoon where Ken's childhood exists 
    and I am already feeling the apprension of that. 
    
    We made it to Lincoln City (we're bypassing Eugene) before we crashed for the 
    night.  No more news about Ken.  We'll make contact in the morning.
    
    

 
    Called this morning.  The nurse said he was fine, but they're getting him 
    ready for another bronchoscopy.  Hopefully, it means they're primarily going 
    in for an inspection rather than to remove mucus signaling more infection.
    The latest information on the infection is that it's a form of the difficult 
    to eradicate MRSA.
    
    We were south of Newport when I suddenly realized we are going past Sea Lion
    Caves shortly.  That's where the photos of Ken, Tricia, and the kids on this
    page were taken last Summer.  More good/bad memories.
    
    Tricia called with some slightly worrying news.  The bottom of Ken's left lung
    collapsed and there appears to be blood in it.  They don't know what the cause 
    of it is so that is the reason for the bronchoscopy.  To top it off, his left 
    hand began hurting after they took the splint off.  He's pretty alert but in 
    much pain.
    

 
   Ken's friend, Craig Boncler has been in to see Ken yesterday and today has 
   been kind enough to send us his impressions by email.  He said "all things 
   considered, he's feeling pretty good right now, but he is still very tired." 
   and "On the positive side, he seemed to be breathing much easier than the day 
   before."
   
   Ken's brother Dan also visited Ken today and reports they had a nice visit, 
   although a little delusional at times.  We think the delusion are from the 
   high level of pain medication he is on.
    

   The nurse said that Ken will receive two units of blood because his hematocrit
   count is low.  The reason seems to be bleeding in his left lung.  The chief 
   cause for the increased pain he is feeling in his left hand seems to be
   Neuropathic Pain. They have increased neuro pain medication in response to it.
      

   Three months in intensive care!  My first impression on seeing Ken at about 
   noon was that he is much worse.  He was breathing in short gasps and his 
   eyes were firmly closed.  After a few minutes, however, it became apparent that 
   the gasps were a new technique he is trying to help him talk.  He was 
   easier to understand, but the gasping is very disconcerting to me and I'm pretty 
   sure it's not helping his lungs recover.  It was obvious that no one has worked 
   with his hands while we were gone.  The fingers were much more rigid.
   
   I was wrong again.  The gasps, while still bothersome to me, actually help him
   to be understood better, and he says the physical therapist says it will help 
   with his rehab.
   
   He did not get the transfusion.  I don't know why.
    

   Ken did get a blood transfusion today. They again tried him on oxygen with no help 
   from the ventilator.  Ken managed 10 minutes before his blood oxygen level dropped 
   too low for them to continue.  Each day they can, they will try to press for more 
   time with him doing all the work.  When Trish visited with the children this 
   afternoon she came out filled with tears.  When she was leaning close to him, he 
   reached up and put his arm to her back and gave a gentle hug.  Small wonders are so 
   heartwarming. 
    

   Ken was quite sleepy today.  They got him up in the neuro chair for the first time at
   this hospital.  This is a flexible chair that allows them to lower his feet and raise
   his head.  Even on the ventilator, breathing is much harder in this position, so he 
   only lasted an hour.  At Memorial Hermann, he was able to endure the chair for longer, 
   but he is getting weaker from being bedridden for over three months.  Depression and 
   anxiety have set in, further increasing his tiredness and disengagement.
   
   He is currently off all antibiotics so they can take cultures and see where they are 
   with infections.  
   
    

   Today was a better day on several fronts.  First, it appears that they beat down 
   the nasty infection.  The sample they took after stopping the antibiotics came back 
   clean.  Second, Ken was awake and alert most of the day.  He and Kathy spent several
   hours communicating.  For Ken that means mouthing words and even taking it letter by
   letter, but they managed.  Kathy felt like a complete idiot when they talked about the 
   Olympics, and basketball fan Ken spelled YAO.  Kathy couldn't imagine what word in 
   English could possibly begin with those letters, until the light suddenly went on. 
   Third, they again tried Ken on a method of breathing that puts lots of responsibility 
   on him.  The oxygen is provided, but he has to pull it in and push it out.  He managed 
   only ten minutes two days ago before an anxiety attack made them stop.  Today Ken did
   quite well for a half hour and probably could have gone longer, but the gal handling 
   the process had promised no more than a half hour, and he held her to it.  By 4:30 he 
   was exhausted, delusional and a little cranky.    
    

   Ken was awake most of the day and breathing even more hours on the ventilator setting 
   that makes him do some of the work, although they didn't push him to the next level, 
   as they did yesterday.  His trach was deflated enough in the later afternoon that he 
   was able to use his voice to communicate. 
   
   One of his doctors said they put the hard collar back on Ken a few days ago as a 
   precaution.  They sent images taken at Kindred to his neurosurgeon at Memorial Hermann
   so he could evaluate the healing in Ken's neck.  The doctor at Kindred wants to wait on
   word from the neurosurgeon before more aggressive rehab begins.     
    

   Kathy actually did the entries for Tuesday through Friday because I competed in the 
   USATF National Championship in Spokane and did not have an Internet connection.
   Ken was noticeably improved from when I left.  He has more pain in his hands than 
   before, but he has gone almost two and a half days on the CPAP setting on the 
   ventilator (very little support) and two or three trials without the machine
   at all.  He was also very alert and talking.
   
    

    Watched the USA basketball team demolish the Chinese.  Ken is a great fan of the 
    NBA -- particularly the Houston Rockets -- so he had mixed feelings, Yao being both 
    a Rocket and  Chinese.  The good news, however was he was completely off the 
    ventilator for an extended period time from 10:00 AM through 4:30 PM -- six and a 
    half hours!  The respiratory technician tried to install a Passy Muir valve so he 
    could talk, but he could not tolerate that.  We'll try it again tomorrow.
    

    Again today he was completely off the ventilator (they call it on the trach collar)
    beginning at 11:00 AM.  It would have been sooner, but he wanted to wait until I
    came in to visit.  I was a little later than usual and felt a little sheepish when
    the nurse told me.  So far -- at 6:20 PM -- he is still on it and feeling no ill
    effects.  Since he had slept with the trach collar, maybe he'll go the night.  He 
    will undoubtly keep improving the time until the ventilator will be history.  The
    respiratory tecnician did install a Passy Muir valve and Ken was able to talk
    almost normally.  Before Kathy and I left, we called Tricia and let him talk to her
    and the kids on the phone.  He enjoyed it but not nearly so much as Kathy and I. 
        
    In addition to his improved breathing, he is also more interested in the rehab 
    exercises.  Despite looking ahead to the weeks and months of rehab still sitting 
    directly in Ken's path, we have a lot to be thankful for today.
    

    Today was as good as yesterday.  Ken was a little tired this afternoon, 
    understandably because Craig and three of Ken's co-workers were in to visit
    him.  He talked non-stop.  Although it tired him, he really appreciated 
    your visits.  Thanks guys.  
    
    Kathy attended the meeting this morning (I had to go to a back-to-school
    meeting, so I couldn't.)  She reported their optimism that Ken would go
    to rehab (TIRR) soon, but it was agreed that to get full benefit, it would
    be best if he is completely off the ventilator.  The way he's progressing,
    that shouldn't be too long. 
    

    This one is short.  The trach collar was on from 8 AM through when we left
    at 6 PM and no ill effects.  This morning he was reluctant to have the 
    Passy Muir valve installed for fear it might tire him out, so our communication
    was difficult.  I persuaded him to try it again this afternoon and after
    seeing the ease he had in talking, I am convinced that the valve makes breathing
    easier for him.  Maybe he'll agree and have it installed as a matter of course. 
    

    Today brought a mixed bag of revelations.  Although we thought that Ken was 
    alert at times in the past, today was the first time that he is truly aware
    of the situation.  He began by talking about the difficulty he was having getting
    his fingers to do anything.  They are just spaghetti and though he could sometimes
    get a knuckle to push a remote button (for TV or nurse call) by trial and error, 
    it was mostly error.  This is the first time he has realized that this could 
    be much more than a temporary setback that can be overcome with time and effort. 
    
    Yesterday he was told by someone at the hospital that he could transfer to TIRR 
    (the rehab hospital) as early as Monday next week.  He told me that he said he 
    would like to wait a week longer so that he could get more movement in his fingers 
    first.  I decided not to sugar coat it any longer.  I explained in detail the 
    recovery probabilities for SCI patients are limited and his best move 
    would be to get to TIRR as soon as possible.  It is well documented that 
    there is a certain amount of recovery within the first year, but the best 
    possibility of that is being in an aggressive rehabilitation program.  There
    is a great deal of research on repair and some exotic possibilities (including 
    stem cells), but all require more strength in the patient.
    
    Kathy found out that he has been on the trach collar for more than two days
    straight.  I had thought (and so did Ken) that they had reconnected the ventilator
    at night.  That is great news because the have told us that the benchmark
    for being completely weaned is three days!
    

    Unbelieveably better news today!  When I came into the room this morning the first
    thing I noticed was the ventilator is gone!  Ken is completely back to us 
    mentally, and realizes that he has a long way to go physically.  He seems to a have
    wonderful attitude toward beginning the rehab process.
    
    The representative from TIRR is supposed to visit him today to assess his readiness 
    to transfer there.  That could happen as early as Monday.
    
    Minga, Straight Arrow and Paw Paw (Tricia's grandmother, grandfather and father)
    came in to visit Ken on the occasion of Minga's eighty-ninth birthday.  Happy 
    birthday Grandma.
    
    I apologize for the dead link yesterday about SCI patients.  Its now
    correct.
    
    

    Ken was the same today.  The representative from TIRR came in to evaluate him 
    after we left yesterday and as we hoped and he will be transferred early next 
    week.  We are not looking forward to the daily commute to the Medical Center 
    again, but it's still his best chance for recovery.  His brother, Dan and 
    family, came in from Austin again and the hospital came up with a bed for 
    Tricia to stay with Ken overnight, so it was really a good day for him.    
    

    A little crabby today.  I can cut him some slack -- having been in essentially
    the same position for more than three months and having to rely on someone
    else for everything he wants, you can understand his mood.  One thing we are
    increasingly worried about is his lack of appetite.  Nothing tastes good to
    him so he just doesn't eat.  He is being fed by PEG  (tube in his stomach),
    but when he was injured he weighed 175 (he is 6 ft 2 inches tall, so he was
    thin to start with.)  He is now down to 152, and without eating that could 
    spiral lower.  That could be a great hindrance to the strength necessary to
    deal with the rehabilitation.  As well as he seems to be, just as removing
    the ventilator was a big step, removing the peg may be an even greater
    obstacle.
    

   We're still waiting for the big move, but Kindred is waiting for the paper-
   work from TIRR.  Ken is trying to eat more, but still has little appetite. 
   I was wrong about the weight yesterday, its 142.  Whoa!  Even more incentive 
   to eat.  
   
   Doctors discovered that Tricia has several herniated disks and is having 
   injections Wednesday to correct it.  The shots are rather routine, but are 
   supposed to be painful. 
    
    

   No TIRR yet.  The insurance company is dragging its feet.  Ken has decided to
   work his shoulders, wrists and fingers himself.  We had tried to do it for him 
   when he was less alert, but because we were not with him around the clock while
   he was alone nothing moved and the joints just stiffened.  Maybe worse, when
   we did it there was little feel for his pain threshold and we'd occasionally turn
   things wrong.  After only a day, his range of motion is already much greater.
   
   He has become a little more enthused about eating and his weight is 145.
   
   Tricia spent the night with him again tonight.
    
    

   Still no TIRR!  However, we have received word that he is accepted and will
   probably go tomorrow.  Someone from there called Tricia and asked her to bring
   some shorts for him.  That will be a big step for him after three and a half
   months of nothing but hospital gowns.
    
   Ken has a great deal of pain in his neck, both shoulders and his thumbs whenever
   there is any movement and though he seemed enthusiastic about it yesterday he is
   avoiding more manipulation by himself or us.
    

   They took Ken to TIRR today!  The first thing the doctor asked him was "Why did
   Memorial Hermann send you to Kindred instead of to us directly?"  Ken said he 
   didn't know so, and when I told them about the thought that he might have needed
   a bronchoscopy that you don't have the capability for, he said "yes we do."  When
   one of the doctors asked why he was still wearing the neck brace after three and 
   a half months and I replied, "The day he transferred from Memorial Hermann the 
   nurse there took it off, saying he didn't need it anymore, but about two weeks ago
   the doctor at Kindred wanted to be safe before they upped the intensity of physical 
   therapy, and had it put back again until it was cleared by his spinal surgeon, the 
   response was "It's unusual to have it on that long."
   
   They are talking about putting him back on the ventilator at night to support the 
   intensity of his physical therapy.  It initially sounded to me like a step backward, 
   but on further reflection I think anything that supports his rehab cannot be bad.
   
   On a positive note, one of the doctors said to Ken,  "No more vacation time.  
   Are you ready to work?"
    

   Kathy and I are sitting here watching Ken sleep.  He seems pretty good today, only
   they are not letting him drink and he is very dry.  They have a barium test 
   scheduled for Monday.  While the link says "You will usually be asked not to eat 
   or drink for a few hours before this test," they seem to be taking the word "few"
   to an extreme.  
   
   We have reached a baby step back toward normalcy and everyone seems to be euphoric.
   Kathy unpacked his "normal" clothes (shorts and t-shirts) and examined them in great 
   detail the way she might have done with his wedding togs in a normal universe.

   Kathy and I have decided to go the memorial for Alyssa in California next weekend.   
   

   
   Kathy and I brought Tricia and the kids in to see Ken this morning.  When we arrived
   in his room he was asleep and when he woke, Kathy could sense that he was in some 
   sort of emotional distress.  He asked his mom to get him some water and when she 
   demurred because we had been told "no drinks!" yesterday, he, like a little child,
   unashamedly lied, "They changed that and have given me water."  When Kathy checked 
   with the nurse, in stormed this short, heavy, black, finger-wagger, like Moses 
   casting down the ten commandments. "Thou shalt not drink!" she raged.  
   
   He has been claustrophobic since being hospitalized and with all of us around him 
   like vultures, it was a shock.  Piling on, in came two nurses then to dress him 
   in the T shirt and shorts preparatory to getting him in a wheelchair for the first 
   time.  With impeccable timing, two more technicians delayed their entrance only a 
   moment to poke him for more blood tests.  Ken stared around him frantically looking 
   for some nonexistent respite and stammered wide-eyed to the nurse nearest him, "Can 
   I have my xanax now?"  He knew he was in the throes of a major anxiety attack.
   
   Kathy, wisely, led our band out of the room and down to the cafeteria to wait until
   they had him dressed.  When we returned, dressed in the new attire, he was still 
   anxious, but he had calmed enough to have a rational disscussion with us.  They had 
   postponed the wheelchair adventure because his blood pressure had bottomed out, a
   phenomenon that often occurs with patients who have been bedridden for a long period.
   They will try again.
   
   Unfortunately, they have also postponed the barium test until Tuesday.  They want  
   to do another bronchoscopy because they believe some of his left lung is not fully 
   inflated.  Ken, therefore, will pay for his white lie with another dry 24 hours.
   
   Kathy and I returned later in the afternoon to a much calmer son.  The anxiety was 
   gone and we had a nice conversation.

   We arived late at the hospital.  I had to mow the yard.  Ken tried to con us out of
   water again, but he is just playing with us.  When I brushed his teeth later, he 
   made no attempt to swallow any rinsewater.  They didn't try the chair again; they'll
   leave that for tomorrow.  Little anxiety was evident and we had a nice visit.  
   

   First day of  school, so I can't get in to see Ken until the afternoon.  Today we
   were disappointed to see him rather subdued.  He explained he was tired and a little
   sick.  They did not try to get him into the chair today, and he mostly slept while 
   we were there.
   

   What a difference a day makes!  Ken was so improved in demeanor and just plain 
   looks, it was as if he lay there in the bed with a spring in his step.  His arms 
   were animated and he was obviously stronger.  He was bubbling over with excited
   chatter about his accomplishment of being up in a wheelchair for a total of
   fifteen minutes, and he couldn't wait to tell us about his magical almost tour.
   The PT nurses were about to go off shift, so the actual tour will have to wait 
   until tomorrow.  His barium test was accomplished and he was cleared with flying 
   colors to eat and drink anything he wanted.  He had a hamburger (well -- just 
   the meat because he was still full from the overnight PEG feeding.)
   
   His hands still hurt (especially the thumbs and wrists,) and his fingers still 
   have no movement, but he was able to handle the nurse's call button like a pro.  
   (That's the first time we've actually seen him do that.)
    

   Ken got his wheelchair tour today for about 45 minutes.  He had a little trouble
   sitting up in the beginning, but from the look on his face when he told us about
   it (we didn't get to watch the tour), he was ecstatic.  When Kathy and I arrived 
   late in the afternoon, Ken was asleep and polite Kathy did not want to disturb
   him, but when I reminded her of his disappointment when he was allowed to sleep 
   through a visit a few weeks ago, she decided it was OK to wake him.  He was as
   good as yesterday and trying hard to eat, but still has little appetite.
    

   Ken had a little trouble with the wheelchair today.  When they put him in it 
   with his crane his blood pressure plummeted.  Even so they leaned his head back
   until it was tolerable and took him to the first floor again for a look around.  
   He was much more awake today than yesterday, but unfortunately, he is still 
   not eating.  He took two bites of chicken and declared it bad tasting.
   
   Kathy and I will be going to California tomorrow.  We'll get reports from the 
   hospital and Tricia, but I may not find a wiFi hot spot to update until Sunday.
    

   Tricia filled us in on her visit.  Ken was up in the chair again and had a very
   intense physical therapy session.  The most significant news, however, was in
   the eating arena.  She enticed him to eat a third of his dinner.
    

   The days we missed visiting Ken have magnified his recovery in our minds.  Ken
   is doing more each day.  They are planning to put him in a motorized wheelchair
   on Tuesday.  He says he can't wait.  The lightheadedness he experienced before 
   has largely disappeared.

   Despite a restless night sleep, Ken is the same as yesterday and we can see that 
   he is indeed the same mentally as before the accident.  His depression has been 
   quashed a great deal and he appears to be viewing his situation with a great deal 
   more rationality.  He seems to be relaxed and in control.
   
   His appetite has improved; more than two thirds of his mom's meatball sandwich
   disappeared forthwith.
   
   Tomorrow, he expects to be in a motorized chair, and he should handle it well.
   I rigged his TV so that he can control the power and change channels, and he
   took to that pretty easily.

   Ken's hands, wrists, shoulders and neck hurt very badly, perhaps from the physical 
   therapy, but whatever it is, he is having difficulty manipulating them on his own.
   No motorized chair yet, but he seems to be maintaining his blood pressure in the 
   manual one.  
   
   He talks about the exercise machines wistfully, especially the one designed for leg
   manipulation.  He's clearly hoping for the miracle recovery.

   Ken was very sleepy today.  He explained groggily it was difficult for him to sleep
   last night because people (nurses and technicians) were in and out.   Kathy and I 
   let him sleep, and got the news from the nurse.  We were told he was in as good a
   shape as he was yesterday.

   Today was different!  We did not go to the hospital, but the call we made to him was
   quickly answered by Tricia.  She is staying the night to keep him company and to 
   learn the physical therapy techniques he will need to continue after his release
   from the hospital.  We still have no idea when that release will be.  It pretty 
   much depends on how quickly he recovers and of course, how long the insurance will
   continue to pay for his rehabilitation.  We are told the limit is sixty days, but
   can be extended by a Texas program called DARS.
   
   Meantime, he is taking great steps in the right direction.  He told us that he spent
   "most of the day" sitting up in a wheelchair.  No motorized one yet, but he says he
   is handling the sitting erect with no blood pressure problems.

   Four months and one day.  I told Kathy as we were leaving TIRR that this week has 
   shown more improvement in Ken than any other week since May 4.  Actually the last 
   two days have been the most dramatic.  Expecting to see Ken in his bed as usual,
   we were jolted (nicely) to see him almost upright in a tall chair with no oxygen 
   feed to his trach.  I felt a tremendous wave of emotion surge through me and was 
   speechless for a moment.  The feeling persisted throughout the visit and I'm afraid 
   I was enthusiastic to the point of bubbling.  Of course, he still has no control of 
   his hands and legs, but if progress continues to be exponential, I am still 
   confident, despite the dire predictions, full recovery is still in the picture.
   
   One of the doctors did a pin prick test and Ken discovered he has some small areas 
   that have no feeling after all, the most notable his pinky fingers and small patches 
   on his back and stomach.  These places of insensitivity have been there since the 
   accident, he just did not notice.  That notwithstanding, sensation to pin prick
   is an indicator according to the article of about 85% probability of recovery.   
   
   He was up in the chair most of the day.  I'm going in the morning to work the
   physical therapy with him.

   Another banner day!  I spent an entire day of many milestones with Ken.  
   
   When I walked in at 7:45 AM he was already firmly established in the chair with 
   his trainer feverishly installing a Rube Goldberg mechanism to it and his 
   right arm.  It's a contraption of metal rods and elastic bands to help Ken 
   manipulate a spoon to feed himself.  After the installation, the trainer and 
   I sported huge grins as he quickly mastered the technique to devour a bowl of 
   frosted flakes.
   
   After breakfast I was trained on a safety procedure and we got the green light 
   for Ken to lead me on a tour of his TIRR environs.  First to the gym, where he 
   instructed me in helping him do physical therapy on one of the "torture chamber" 
   looking devices.  After a while there, we went outside to be greeted by a 
   wonderfully cool Houston morning and just sat there and talked for an hour or two.
   
   At lunch, his resurrected appetite (or maybe just his enthusiasm at being able to 
   feed himself) saw him finishing a sizeable portion of barbequed chicken and rice
   (well, a lot of the rice ended up on his shirt.)
   
   Outside again for what seemed like only a few minutes, we had to run to meet 
   his scheduled physical therapy in the gym at three PM.  I helped him again with 
   the "torture rack," after which we strapped his hands to a pedalling device with 
   ace bandages and he enthusiastically exercised with it for the first time.
   
   By the time I left at 5:30 PM, he was totally exhausted and I had learned a great
   deal more about my son.  The most significant revelation was how much he misses
   the people and the work at Papa John's Pizza.

   Ken took Sunday off and stayed in bed all day.  He was wide awake and interested
   in visiting, however, and after everything that has happened this week, he deserves
   a break.

   Perhaps I am expecting too much.  He was quiet and tired today.  Granted, we didn't 
   get to the hospital until 5:15, so I did not witness most of the activity.  He said
   he had put in several hours of PT, and was too tired to push it further.  With the
   progress of last week I am expecting something new and better each day.  
   Unrealistic, I suppose.
   

   Ken seemed a little more awake today even though he said he didn't get much sleep
   in the night.  The other patient in his room had a rough night and made a lot of
   noise.  Ken's electric chair is ready, so he'll get into that tomorrow.  Maybe that
   will lift his spirit.

   Kathy visited early enough today so she could watch Ken's physical and occupational 
   therapy sessions.  It was interesting to watch Ken and to receive explanations 
   from the therapists.  Ken was disappointed when a test of the motorized wheelchair
   planned for his use indicated the need for more tinkering, so he now has to wait 
   until at least tomorrow and possibly longer to enjoy yet another step in his
   recovery. 

   Ken finally got his power chair this morning.  Time was spent adjusting the
   various components to fit his body and his needs, and then off he went for
   a couple of spins around the gym.  Unfortunately the issue of plummeting blood
   pressure reared it's ugly head just as Occupational Therapy was about to
   begin, so he was returned to his room and put back to bed.  The doctor 
   arrived and said with Ken's injury, blood pressure fluctuation is an issue
   but should improve in time.
   
   Hurricane Ike's projected path will pass directly over Houston and us.  Although 
   there has been no evacuate order for our area of north Houston nor the Medical
   Center where Ken is, my school is already cancelled for tomorrow.  I will be
   going to stay the night with Ken tomorrow to ride out the storm.  Because only
   one is allowed to stay in the hospital, Kathy will be going to Austin to stay
   with Dan and his family so she won't be alone. 

   Ken and I are sitting tight on the fifth floor here, ready to ride out Ike.
   I rigged up a phone for ken that he can handle with the wires.  Not pretty, but
   it works great.  Give him a call. 713-797-7512.
   
    

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Saturday September 13

   We're still here and it seemed normal, except we have no TV reception.  I hardly 
   noticed the wind and rain.  From the window you could see the trees were being 
   tossed and there was some kind of flimsy stucture (it looked like blue canvas and 
   aluminum pipe) was scattered around in the street.  They are saying that 4.5
   million people are without power, but here in the medical center, it didn't even
   flicker.
   
   Ken is feeling kind of sick.  His blood oxygen level monitor set off alarms 
   beginning last night.  The first time, the respiratory technician was tending to
   him, and he put the ventilator on him.  The others were resolved as Ken became
   aware of the low level and just took deep breaths.  
   
   The respiratory tech came in and put a little oxygen over his trach.
    

   The big hurricane continues to feel like business as usual to me.  Other than having
   to roam around to find gasoline, not much is different.  At home we are without power,
   and therefore no water (we have a well and electric pump,) but with a small generator
   for a fan and the wonderfully cool weather we are comfortable.  I anticipate It will
   hit a little closer to the vest if the power is not on soon.  Getting to the medical
   center to visit Ken and back is actually easier, because most people are staying
   home.  I understand that places closer to the Gulf have been hit hard, but with no 
   TV to to see those disasters, I find it hard to realize.  
   
   Ken is much better today.  Unfortunately his power chair is having mechanical 
   problems and he is not as independent as he wants to be.  However, it worked out 
   well with me pushing him in a manual chair.

   No school until Thursday because of Ike, so Kathy and I went to the hospital 
   together to visit Ken.  He is about the same.  The power chair is still broken, but 
   we took him outside in the manual chair and he was comfortable.  Still, he would 
   like more independence.
   
   At home we found the power back on.  Sure was great to shower.  
   

   Ken got a different power chair today.  I did not use the word "new" because it's 
   clearly not new.  The hospital has several such "trainers" that they allow patients
   to audition.  Clearly a good idea. A power chair can cost up to $20,000, but Ken's
   insurance will only cover $2,500 for all mechanical supports, including a chair, 
   hospital bed, lifts to get him in and out of bed and vehicle modifications.  Our 
   education beats painfully on.
   
   Thankfully, the DARS program I mentioned before, may cover all that, but it 
   is still likely that much of the cost will have to come from elsewhere.
   
   The chair was easily mastered by Ken after his trainer made modifications to suit 
   him, so it actually was a good day for him.  The news that his house had power
   restored today topped that off.  He will not have to worry about the comfort of
   Tricia and the kids.
   

   Today was momentous!  Not all was positive, however.  I was understandably upbeat 
   when I began to exercise Ken's leg and a strong spasm caused his leg to move ten 
   or twelve inches off the mat at the knee.  His physical therapist's response
   was to corral the knee with a strong hand and prevent its moving at all.  She 
   told Kathy and me that muscle spasms were not a good thing and we needed to
   quash them at all costs after we'd been told by doctors all along that such
   spontaneous movements were not bad at all and could be a good sign.  I thought
   I remembered seeing such information on SCI web sites as well. My mood was 
   imediately dashed into the dumper.  After all, I thought, she is a  professional 
   so she can't be wrong.  It weighed heavily on me, until I had no choice but to
   renew my research.  I Googled for three or four hours and found nothing that 
   would support her anti spasm campaign.  I found much more instead to bolster
   my original opinion.  There is no doubt the PT is flat wrong!  This neatly sums
   up what I found on site after site:
   
        Spasticity also helps to maintain muscle size and bone strength. 
        It does not replace walking, but it does help to some degree in 
        preventing osteoporosis. Spasticity helps maintain circulation 
        in the legs and can be used to improve certain functional activities 
        such as performing transfers or walking with braces. For these 
        reasons, treatment is usually started only when spasticity interferes 
        with sleep or limits an individual's functional capacity.
        
        http://www.apparelyzed.com/spasticity.html
        
   Ken's chair was modified again today, and seems to fit him pretty well.  There 
   still needs to be some modification to the arm rests.  He's tall, and the rests 
   need to be higher than normal.  He was in the chair from when we arrived at 10 AM 
   until we left at 5 PM with only a few stops for PT.  He had no bouts of the blood 
   pressure problems, nor of oxygen deficiency that have marred previous stints.  
   One excursion was with a group travelling outside for about two blocks and back.
   
   I confronted the PT about the spasm issue and though she did a song and dance an
   understanding about the spasms was reached.
   
   An unexpected controversy presented itself in the form of Ken's pulmonary doctor 
   who approached him in the gym while he was doing PT.  The doctor asked Ken if he'd 
   had surgery on his lung.  Of course, Ken did not remember, so I told him about the 
   surgery on "Terrible Tuesday" and the removal of 15% of one lobe.  His response was 
   an epiphany to him.  "Thats why we're having difficulty reinflating that part of 
   the lung -- its missing, not collapsed."  Kathy and I were infuriated.  "Why didn't 
   you know about the surgery?" I asked, much calmer than I felt "His records were 
   here to read."  He began an exaggerated form of the "Texas two step," "I did read 
   it," he stammered, "but I must have missed that."  
   
   When we first came to TIRR, he had been put on a ventilator at night even though he 
   had been totally weaned from it at Kindred.  To our questions they replied that 
   part of his lung was collapsed and they were trying to reinflate it.  Then two or 
   three days ago the doctor came to us concerned that Ken might not be able to go home 
   on his target date of the middle of October if the lung was not reinflated.  The 
   therapy was for a non-problem.  Hopefully, nothing ill will result.  The still-
   dancing-not-too-lightfooted doctor assured us in his best bedside manner "Given 
   the surgery, I am really pleased with his progress, and we will begin the weaning 
   process from the ventilator soon."
   
   

   Kathy and I have decided to take Ken in at our house until Tricia can get back on 
   her feet and is able to care for him.  Our watch will begin sometime after the 
   middle of October when the insurance coverage for rehab expires.  He is covered 
   for 60 days of rehab per calendar year, so if he needs it he can return to TIRR 
   after January 1 for an additional 60 days. 
   
   They are still talking about more time to wean Ken from the ventilator.  As far 
   as we can tell, with the exception of the physical disability, Ken is back to
   normal.  He has begun eating full meals and is breathing comfortably. 
   
   
   

   Another great day!  Ken called it frustrating.  On his first trip downstairs to
   a rehab session, he had difficulty pushing the elevator button (he still has no
   control of his fingers and his arms are so weak that he cannot reach higher than
   his shoulders.)  Someone came along and helped him get in, but when the car reached
   the first floor the samaritan exited quickly leaving the doors to close in front
   of Ken.  Like the Kingston Trio's "Man who never returned"  he remained in the 
   elevator riding it up and down until someone finally understood his predicament 
   and got him off.
   
   He had several other minor incidents akin to that, but to me they were simply a 
   reminder that he is sufficiently recovered to be irritated by them and to
   laugh at himself about.
   

   Kathy and I agree this week has seen more improvement in Ken of any since the 
   accident.  Not only that, we have seen other patients who had a similar injury
   return to TIRR for their second rehab with still more improvement.  They have 
   enough strength in their arms that they do not need a power chair and can aid
   in transfer from chair to automobile seat.
   
   We are upbeat.
   

   Ken's condition is so normalized that I am turning my thoughts toward a cure.
   It is somewhat frustrating that the entire focus of TIRR is to deal with the
   paralysis as a life long condition.  Their attitude is to develop ways to cope,
   rather than to explore information about the promising research that is being
   conducted.  Rather it seems that any mention of the possibility of cure is 
   almost taboo.  Whenever the subject is approached to a staff member (many of
   whom are paraplegic from spinal cord injury themselves,) they quickly change 
   the subject or profess ignorance.  The attitude reminds me of Congressional 
   efforts to pass a bill to allow federal funding embryonic stem cell research.  
   If they had removed the word "embryonic" from the language it would have long 
   since passed, and steps would be much closer to a cure by doctors like 
   Robert Lanza who matter-of-factly states with funding he could cure paralysis:
   
          "We have cells that reverse paralysis in sheep that have 
          spina bifida and can’t walk. After we injected our cells, 
          the first animal that we treated returned to normal and 
          was walking fine.  The same model could work for paralyzed 
          humans, but without funding, we haven’t been able to repeat 
          the experiment in five years. People are in wheelchairs 
          when there could be a cure."
   
   And without harming embryos.
   

   Just when you are getting used to a new idea and Something scrapes the surface 
   like a needle pricking an over full balloon and reality burst out full force. 
   You reason, "OK! Ken is recovering and seems to be getting comfortable with his 
   new station in life.  He can get around in his motorized chair and there will be 
   more recovery down the line."   The simple game they played in rehab today where 
   players have to toss a pair of small plastic pigs, suddenly hammers you back to
   reality.  Others in rehab have difficulty controlling their fingers, but Ken has
   nothing at all!  You place the pigs in his open palm and he shakes his arm until
   they bounce out.  The rest of what you are beginning to accept as his comfort
   zone comes crashing back to reality.  The urine bag he must display, the "program"
   (euphemism for defecation) that someone will have to help him with and the 
   inability to do any of the personal hygiene tasks that we all take for granted 
   shows clearly that with this injury, coping with a comfort level does not exist. 
    
   The hope then turns to stem cell research.  There is near future hope in that
   arena, at least the politics seems to be settling down.
   
   From their position statements on stem cell research, neither Barack Obama nor 
   John McCain would have vetoed the bill to allow embryonic stem cell research.  
   One hopes that when it again passes Congress, whoever wins will stick to his 
   position.  How much farther down the road would we be if the presidential ban 
   on funding in 2001 had been more liberal OR, more telling, if President Bush
   had not vetoed the bills that had passed by wide margins in both houses?
   

   Kathy stayed the night with Ken to get training in techniques dealing with
   his care.
   
   I talked to Ken's primary physician Dr. Juan LaTorre at length about my 
   frustrations and wonder about the lack of information regarding spinal cord
   repair techniques and results from other countries.  He agreed and added, "the
   foreign techniques have produced information only about positive results and 
   little about those negative or neutral."  He also said "there have been only three
   patients from TIRR who have undergone such treatment, two of whom reported
   little or no improvement and one who actually had a greater level of pain
   afterward."  With three being too tiny a sample to make any judgement I pressed 
   him for information about whether he knew of a larger sampling of Americans
   who have undergone such foreign treatment.  Although, the techniques differ 
   from country to country and even within each country, there ought to be enough
   for the beginnings of such a study and perhaps that could be added to the current
   survey involving TIRR and the Christopher Reeves foundation that is currently
   doing only bean counting.
   
   
   

   Ken and Kathy worked on more techniques to be ready for the home stay with us.
   Ken is on various antidepressant drugs, but is tapering off and his mood seems
   very stable.  Although, I can't be certain of what he is feeling, he does laugh and
   joke quite often, signaling, to me at least, he is comfortable with his progress.  He
   seems to have accepted that progress will be a long haul and continues to be upbeat
   about a favorable outcome.
   
   Today, however, he fortified himself with Xanax.  His mother was scheduled to try 
   transferring him from the chair to the bed with the use of a sliding board.  The 
   procedure is pretty straight forward: Tilt Ken and slide one end of the board under 
   one side of him, slide him across to the bed and pull the board out.  All of this 
   to be accomplished by a tiny lady.  It was not to be.  The physical therapist could 
   not even do it.  Ken has muscle spasms that cause him to lurch exactly the wrong way 
   at the wrong time.  
   
   I think transfers will be accomplished by the hydraulic sling or by me.
   

   As of today, Ken is off the ventilator for good -- again.  They will keep the trach
   in throughout the flu season, but he really does not need it.  
   

   Today was not a good day for me.  For whatever reason, my mind kept pulling me to Ken
   and I would agonize anew about his prospects.  It didn't get much better when I got
   to the hospital.  One of my students needed to make up a test, so I arrived late.  
   I had told him I would be there before 5:00 PM and we'd go to the cafeteria to eat
   dinner.  When I finally arrived at 5:15, I found him in his room alone in the dark
   with a forlorn look on his face.  In the cafeteria, he perked up some and described
   with enthusiasm the motorized rehab bicycle they were planning for his PT tomorrow.
   After dinner, we visited outside for awhile and I discovered he has toned down his
   walking plans for the near future.  "Do you think," he asked somberly, "I will be 
   able to drive a car again?  I miss it."  I'm going to the hospital tomorrow to watch
   and help with his PT.  I will not be late and I'll do my best to lighten the mood.

   I was not much better today, but Ken was.  He was animated and happy to see me and 
   his attitude was contageous.  The PT did not go as well as it could have, however. 
   He told me he felt tired and didn't get to many stations.  After lunch we went back
   to the gym to try the bicycle he told me about yesterday.  That was not successful.
   The pedals were lower to the ground than he could reach because his motorized chair
   is high.   
   

   Dan (Ken's brother) and his family visited from Austin.  They took a trek of about 
   two and a half blocks to a nice cafeteria at M. D. Anderson hospital.  In his weakened
   condition Ken tires easily and, although he said he controlled the chair most of the
   way, he was worn out by the time they returned.  By the time we arrived with his kids
   Alexis and Brendan later, Ken was already back in bed.  Even so it was nice.
   
   Kathy will stay at the hospital Monday and Tuesday night continuing her education, so
   I'll be alone when I get home.
   

   Ken's wrists and hands just get stiffer but there doesn't seem to be anything I can do
   to help.  For the first couple of months after his injury I could manipulate his fingers
   and wrists but the pain in them just seems to grow.  It is now so bad he can barely
   stand to be touched -- especially in his thumbs.  I kept waiting for the pain to go
   away, but now it just appears leaving them alone has simply made it worse.  I am going
   to have him ask the doctor about prolotherapy.
   

   When I arrived, Ken and Kathy were outside enjoying the wonderful Houston autumn
   weather.  The memorized dialog with Ken and me repeated itself with the usual monotone
   until the question, "How far can you raise your arm?"  In a well rehearsed effort, Ken
   summoned all his effort and raised his right hand to about the height of his shoulder
   but nowhere near his face -- his immediate goal.  I was somewhat heartened, because the
   move seemed relatively strong and it was as good as it has been -- maybe a little better.
   Satisfied, the conversation took another turn.  Suddenly, something drew my eyes to his
   face.  Something was different, and I didn't immediately know what; perhaps the sight
   was just so ordinary my brain dismissed it as unworthy of note.  Kathy recognized
   it first: Ken was scratching his nose and eyes with his left hand!
   

   Had my first experience helping with the catheter today; everyone should do it at least
   once.  The first thing I saw when the "catheter kit" was open was a nasty looking tube
   with a bulbous head about as big around as a nickel.  The only thing I could think was
   "Oh my God!"  You can imagine my relief (along with every other man reading this) when
   I learned it was only a swab to sterilize the area.
   
   Ken is moving both arms with much greater range.  Still no fingers, but maybe that will
   come.
   

   Not much to say today -- meaning Ken is still good.
   

   Little steps that were big leaps to Ken today.  He is breathing so easily that the
   pulmonary doctor put a cap on his trach so he is breathing completely normally.  Even 
   greater in Ken's mind was the slight movement of his right leg THAT HE CAUSED to 
   happen.  Without consciously trying to move it, he says he pushed himself back into
   the chair seat with it.  When he realized the leg worked, he couldn't repeat it.  
   Maybe it was just a fortuitous spasm, but he doesn't think that was it.  He tried
   to move it again while I was with him and I thought I saw some slight movement (again,
   it could have been just wishful thinking.)  If it happened once, it must happen 
   again.  Still no movement in his fingers -- a major wish of his so he can play his 
   video games.
   

   This was not a good day for me, nor for Ken.  He was a little sick.  He said he had 
   gone out and fallen asleep in the sun for about three hours and was still hot.  He had 
   little appetite even though they had brought him no breakfast or lunch.  At five 
   thirty when they still hadn't brought him a dinner tray, the nurse sent out for one.  
   The food was not too appetizing (some kind of pasta soup) and he ate little.
   

   I need to tell the chair saga.  The power wheelchair Ken has been using at TIRR cannot
   be brought home with him and the state DARS program takes a lot of time with the
   approval process.  We are told that the approval procees is just red tape and Ken is a 
   virtual shoo-in.  "OK," I thought, "we'll just buy a chair and when the approval comes 
   through, they can reimburse us.  Not to be.  They will not reimburse.  Anything 
   purchased before that will be just eaten.  A wheelchair company has committed to loan 
   Ken a chair until the approval process is complete, but it is a manual chair.  Ken was 
   down in the dumps for several days about that.  His very rational reasoning: "They give 
   me a motor chair and such greater freedom and independence and then just jerk it away 
   from me."
   
   My thoughts then turned to getting one anyway. "How much can they cost?" I reasoned.  
   The answer to that came quickly in my research -- a lot!  Even the cheap brands cost
   $5,000 and up, while the better ones with the features Ken needs can run to $20,000
   or more.  Ken needs a chair with power "tilt" capability.  
   After a spinal cord injury the body has difficulty regulating blood pressure, and 
   the tilt is used when pressure goes low.  When we first arrived at TIRR, there were
   several patients in front of the building in tilted chairs.  The angle creates a 
   pose jaunty and defiant as if they are shaking their fists at the universe.  Its 
   almost a shame to realized it is in fact much less challenging than it appears.
   
   On a whim I turned to eBay and looked at a dizzying list of the cheap chairs and a few
   of the high end ones -- of course with high end prices.  Then I began finding a few
   that looked promising.  Price tags were between $1,500 and $2,000.  Not bad and when
   DARS finally ended its snail trail, we could resell on eBay and not take too bad a hit.
   Then I found it!  The same brand chair Ken was using at TIRR (hardly used) for $600 
   and $300 for shipping.  I'd have had to have broken my finger to keep it from clicking 
   the "Buy it now" button.  I was really pleased with myself -- I might even make a 
   profit!
   
   I first decided not to tell Ken and make it a surprise.  In the back of my mind the
   nagging thought that something might go wrong reinforced that, but Ken when was still
   down about it, I decided to tell him.  The news was an obvious boost to his morale --
   part of the reason for his good day Friday.
   
   Murphy's law kicked in!  The guy selling the chair backed out and refunded my money.  
   He discovered that power wheelchairs weighing 300 pounds cost upward of $800 to ship
   from California.  I had to tell Ken Saturday.
   
   We're not done.  It's looking up.  We have located a couple of resonably priced chairs
   here in Texas.  Ken knows about that and the troop's morale is up.
   

   Ken seemed to be having a very good day today.  Kathy is staying with him again this
   week preparatory to him coming home next week.  Wednesday, October 15 is the day.
   His pain seems to be less, especially in the hands.
   

   Ken's arms continue to get stronger.  He is now able to rub his face with either hand.
   I say "rub" rather than "scratch" because he still has no strength in his fingers.
   I made a "cup" attached to the joystick on his chair, so he can maneuver it with his
   fingers as long as his fingers stay inside the cup.
   

   Those of you who read this daily probably think I'm caught in a "time loop" akin to
   "Groundhog Day."  Isn't copy/paste great!
   
   Kathy gave Ken a good time today.  He went out on his own early this morning and got
   stuck in an elevator.  Nobody else was stuck but the inner door would not open all
   the way and his chair would not fit through.  A crowd of nurses and staff promptly
   gathered vowing to bring him his medicine and food regularly.  Soon after Kathy 
   arrived, someone who knew how to fix it saved the day.  She faithfully accompanied
   him down in the elevator.  At the first floor, seeing the door fully open she exited
   and in exultation forgot to hold the door for Ken.  He was still brimming with patience
   by the time the door opened after a trip to the top floor and back.
   
   We made a deal for an interim power chair and his brother Dan delivered it this 
   afternoon from San Antonio where he had been attending a national health conference.
   When I left for home Ken, Tricia and the kids were enjoying a great family outing.
   

   The reality of Houston traffic hit me like a hammer today.  It took me 45 minutes to
   go about 6 to 8 miles, the last half of which was with gritted teeth, trying frantically
   to relieve a painful shin cramp in my accelerator foot.  A five minute walk around
   the car would have done it, but I would have probably been lynched had I tried it in
   that sea of carbon monoxide belching monsters.
   
   I got to the hospital about a half hour later than I expected and in a nasty mood.
   Seeing Ken and Kathy fixed that.  Ken was in a good mood.  As he approaches next
   Wednesday and discharge from TIRR, his attitude seems to be buoyed daily.
   
   

   Ken remains upbeat and is seemingly resigned to the new order.  I too, more and more
   find myself accepting as normal the daily drive to the hospital to see Ken in bed or 
   in a wheelchair, and not with his family where he belongs.  While I accept that it is
   probably the best way to deal with it psychologically, there underlies a danger that
   I can't put into words.  
   
   

   The doctor removed Ken's PEG today.  As a consequence, (maybe) he is eating a great 
   deal better.  He said he had a pretty big lunch and the huge cheeseburger this evening 
   disappeared to the last bite.  My thought is that the tube itself was suppressing his 
   appetite.  No doubt that's not a very scientific opinion, but I'm sticking with it.
   The re-emergence comes in the nick of time.  He has lost more weight: down to 131 from
   his normal of 175.
   

   Ken's appetite has returned with a roar.  He said he ate a big breakfast, wanted more
   and lunch was about the same.  I ate with him in the MD Anderson Hospital Cafeteria
   this evening so I can attest to his craving for food.  Maybe I was right about the
   PEG suppressing it.  We are looking forward to future weight gain and the corresponding
   strength improvment that should accompany it. 
   
   
   

   The power chair we got Ken has been readied (new batteries and size adjustments,) the 
   bed was delivered today and the move is within 36 hours.  The excitement is mounting.
   Home on Wednesday.
   
   
   

   The hospital bed and what seems like a year's supply of medical paraphenalia have been
   delivered.  Kathy and I worked into the night making sure everything is just right
   for the homecoming.  Ken seems to be really excited.
   
   

   Ken's home!  Not much to report here.  Kathy prepared really well and the move was 
   smooth.  Ken is happy to be away from the hospital.
   

   Spent time this evening "modifying" a remote control so that Ken can operate the TV and
   DVR.  Ken has no movement of his fingers, but he can use them to manipulate levers.  I
   used duct tape and coat hanger wire at the hospital to afix levers that worked suprisingly
   well, but that only needed on/off and up/down to select the channel.  I needed about
   fifteen levers for the DVR.  The remote looks like a huge spider with a duct tape body.
   He hasn't used it yet, so that's the next step.  I took Ken's chair for a spin around the
   yard this evening and it looks to be safe for him to go just about anywhere in the yard.
   

   I am optimistic.  This evening while we were putting Ken to bed, his legs were extremely
   active.  Spasms would strongly raise his knees to 90 degrees and after his legs would
   slowly move back flat on the bed.  Ken says he is causing them to move back down and
   though we realize it could simply be the result of gravity, we want to believe that he
   is regaining some control.  Range of motion in his arms is returning closer to normal
   as well.  Time will tell.
   

   Ken was out and about in the chair and had no trouble in the grass.  He enjoys being 
   outdoors so his spirits were up today.
   

   Birthday celebrations for Dan, Tricia and Alexis were fun as usual.  The sight of Ken
   in his chair evinced past such get togethers and memories of his hardiness, but it
   was not so sad.  We all have faith in a bright future.
   

   Slight crisis this evening.  Kathy was cleaning around Ken's trach when suddenly the 
   plastic tube was out of his neck, lying on his chest.  After a brief panic (no one
   told us what to do in that event) she simply replaced it.  Problem resolved.
   
   Ken had a great deal of congestion today, requiring more frequent than usual suctioning
   of his trachea.  Kathy is by now an expert in that technique, so all was generally well. 
   

   Ken has heterotopic bone growth in his right knee, causing it to appear about twice 
   normal size.  It developed early on and we were told it is a common side effect of spinal 
   cord injury which seldom causes adverse symptoms.  As you can see in the link above, it 
   can cause delitorious effects, but so far Ken doesn't seem to notice any problem yet.
   

   I took an application for a handicap placard to the county tax office today.  The 
   multiple paradoxes jumped up like a "Whack-a-mole" game.  "He needs to sign the form,"
   said the clerk.  I was quick to reply, "He can't write."  "And we need to see his 
   driver's license," the clerk went on.  "Ken's wallet went missing somewhere after the 
   accident."  "He needs to have it reinstated," she said.  "He is handicapped.  He can't 
   drive,"  I said tiredly.  Undaunted, she insisted, "He can get an official ID card 
   then.  Just have him go to the DMV office on Grant Road."  I repeated, "He can't 
   drive.  He is still in recovery and should not be in that office, especially not 
   to wait in that long line.  Can I get it for him?"  "No they need to take his picture."
   
   I can't blame the clerk.  She finally got it and gave me the placard.
   

   The Battle of Dynasplints.  Like many with spinal cord injury, damage to nerves 
   controlling muscles is inconsistent.  His wrist muscles controlling extension of
   (outward) movement have a great deal more strength than those that control flexion.  
   Consequently, his wrist are unnaturally flared outward.  There are several braces or
   splints available to correct it, the obvious best are Dynasplint.  Ken got three of
   them when he was at Kindred Hospital, one for the wrist and two for his elbows which 
   had a similar problem but less radically.  We didn't think to inquire about the cost 
   or any other consideration, they were there and needed so he used them.  When we got
   to TIRR Hospital we were told they were rented.  Again, though we thought something
   as apparently minor as that being rented was odd, we dismissed it again.  Last week
   we got a surprise when we were told the splints rented for $395 APIECE per month and
   he had already used them for two months.  Insurance paid it, but the $2400 bill 
   exhausted the total benefit for that kind of device.  As you can see from the link
   above (although it is a clever design and undoubtedly very effective) it isn't much
   for $400 per month.  The sales rep (who is also supposed to service) visited with
   us today for the first time -- he said he had been to Kindred three times, but TIRR
   was outside his territory.  He showed us how to use the splints and how badly wrong
   we had used them.  He had an adjustment tool that we had never seen and showed us
   with aplomb the correct way to do it.  I coolly explained the obvious to him that
   the $395 had to have been for the non-existent service rather than to rent a brace.  
   He countered that the price to buy the device was $2,800.  I could rent a car that 
   sells for ten times that for not much more.  
   
   Kathy will counterattack tomorrow with a phone call to the company.
   

   Got a good "Buy it now" deal on a 2004 van with ram and lowered floor.  DARS should
   cover the modifications he will need, but it will be awhile until they approve and 
   they will not pay for anything bought prior to approval and any modifications must
   be installed on a new vehicle.  By the time that approval process is finished we 
   expect Ken may be able to drive a properly equipped vehicle.  The van deal is stopgap
   to let Kathy and Tricia (when she can drive) ferry Ken to doctor appointments and
   other places.
   
   I will fly to St. Louis to pick it up tomorrow.
   

   Had to scrap the St. Louis trip.  The seller could not work it out for today, so I
   will have to go on Tuesday. 
   
   Ken had a great deal of congestion today and feels like he needs to go see the doctor
   soon.  Hopefully, he can wait until Wednesday or Thursday when I get back.  It is very
   difficult (maybe impossible) for Kathy to put him in the car.
   

   Tricia and the kids were here for the weekend.  They stay at home so the kids can 
   attend school regularly and the weekends are really nice for them all.  A little 
   hectic for Kathy and me, but worth it.  Tricia has recurring heart palpitations
   and irregular blood pressure, but her knees seem to be mostly healed.  Some pain
   still, but she is able to do without the wheelchair.
   

   Went to bed early to prepare for the adventure, so I didn't write last night.  Now as
   the orange band to the east of the airplane widens into the sun of Tuesday I am back
   to this.  I am on my way to St. Louis to drive the bargain van with largely questionable
   mechanical condition.  Hopefully I'll arrive home again late tonight with a usable 
   vehicle, or at least one that can be repaired.  
   

   Arrived St. Louis right on time -- its almost like a bus ride.  Called the guy who is
   meeting me.  He is late.  Will pick me up in 10-15 minutes.  Hope he is not late.
   
   The drive home was a breeze.  Though the van has clearly gotten a lot of wear, makes
   a great deal of noise and floats like on a cloud (struts are worn out) a little repair
   and it should fill the bill.  
   

   Kathy has been giving Ken his medicine inside a small bowl of ice cream to make it
   more palatable.  We've gone through lots, so I picked up a new half gallon of Blue Bell
   "Banana Split."  I'd never tried it before so a little variety.  With Ken's first bite
   his face scrunched up like he'd been poisoned and he ejected a terse, "That's horrible!"
   Prepared, I wasn't shocked by the taste, but it isn't very good.
   

   Ken and I watched the second game the Houston Rockets played in the new NBA season.  We
   both enjoy the competition of the home team and are looking forward to a great run this
   year.  They beat the Mavericks and we got to talking about last year's run to the playoffs,
   Ken mentioned he had missed the end of the run and I, not thinking, asked why.  "I was in
   the hospital," he said.  How can it have been that long ago?  Six months -- election day.
   

   Trick or treat!  Ken really enjoyed watching his kids.  The van came just in time.  Ken 
   rolled out right into the tour of the neighborhood.
   

   The routine is setting in.  It takes an hour up to two hours twice each day to get Ken
   out of bed and exercise him in the morning and back in bed again at night.  Kathy gets a 
   helper who comes in for three hours on week mornings and I help at night and weekends.  We 
   are happy to do it and it is actually fun and a good source of exercise for both of us, but 
   then we remind ourselves it could be forever. 
   

   Ken actually remembers his ICU delusions of space ships and transformers.  His explanation
   is a great deal more rational than we thought at the time.  He eavesdropped on a conversation
   between me and a doctor about possible experimental treatment.  In his impressionable state
   he transferred that into a dream about a "Twilight Zone" scenario, in which he had   
   undergone experimental treatment that involved a virtual reality test intended to measure
   the limits of his will.  His inability to move his legs only reinforced that.  He knew, 
   however, it wasn't real and the deeper he was immersed the harder he fought against it,
   finally refusing to cooperate.
   

   Yesterday and today have been really good days for Ken.  Though he still has no control over
   his hands, torso and legs, his arms seem to be recovering gradually and he was really upbeat
   about it.  Kathy took him by his Papa John's store today.  Some of the workers were the 
   same ones who worked for him and he enjoyed the reunion.
   
   

   Yesterday and today have been really good days for Ken.  Though he still has no control over
   his hands, torso and legs, his arms seem to be recovering gradually and he was really upbeat
   about it.  Kathy took him by his Papa John's store today.  Some of the workers were the 
   same ones who worked for him and he enjoyed the reunion.
   
   

   I have neglected this chronicle for the past two days.  Couldn't think of anything to say.
   Don't know whether that's good or bad?  On the heels of Ken's visit to his store, he was 
   invited to a manager's meeting.  He attended that yesterday and in the process some 
   possibilities regarding his future with Papa John's were bandied about.  He was quite
   upbeat about that. 
   
   

   Kathy is showing a little wear.  She is a stout trooper, but everyone has limits.  Caring 
   for Ken is a full time job.  I said last Sunday, she spent two hours morning and evening 
   just getting him in and out of bed.  I actually underestimated her mornings; its more like
   three and a half, because that's bathing time and its much harder to get him dressed than
   undressed.  Morning and evening is only part of her day; she spends the time in between on
   duty, responsive to his every need.  I give her a little respite on the weekends, but she'd
   dearly love to be off duty on Monday mornings and Thursday evenings for knitting and square
   dancing.  
   
   She and I have been rewarded with clear weight and strength gains in Ken over the last two 
   weeks.
   
   

   The spasms in Ken's hips and legs have taken over.  Its like they have a mind of their own:
   they want to collapse into the fetal position and it takes a full series of exercises twice 
   a day to relax them.  The movement is strong and if he had any control of them at all it 
   would be a positive sign to us.  Unfortunately, there is none. 
   

   I am feeling plenty pleased with myself for getting the handicapped van (That feeling is 
   dulled somewhat when I think of the initial repair bill and the possibility that the clunker 
   -- 213000 miles -- will die at some inopportune time.)  Kathy and Ken have been out and about 
   every day doing one thing or another.  Tomorrow they load up for the first follow-up visit 
   back at TIRR.  Pleased or not, I will be the happiest man in the world when DARS approves 
   the upgrades on a new vehicle. 
   

   Ken is spending the night at home and the house seems empty.  It's Thursday -- square dance 
   night.  We planned Ken's home visit, so we could dance, but Kathy just looked at me with
   weary eyes and confessed she was just too tired.  Maybe next week.
   

   We all went to the Houston Rockets basketball game this evening.  We all enjoyed it.  The 
   Rockets beat the Hornets pretty soundly.
   

   Ken is very uncomfortable sleeping on his side.  The weakened chest muscles still cannot
   create enough cough to clear his airway.  Consequently, he has difficulty breathing and
   is unable to sleep.  Flat on his back is the only comfortable position for him.  Problem:
   He has developed a large bed sore on his lower back that could possibly been prevented
   by shifting his position side to side during the night.  We are trying to devise a system 
   or even padding to allow it to heal.
   

   Kathy and I went to Austin to witness the legalities of the adoption of our newest
   granddaughter, Jessie Claire, leaving Ken in the hands of some capable subs for Kathy.
   We got a prescription for some bandages specifically for bed sores.  They must be made
   of gold: $250 for a small box of them.  They had better work!
   

   I rigged up a method to weigh Ken with a sheet of plywood and two bathroom scales (we
   have to weigh his chair with him in and out of it and subtract.  One of the scales is an
   electronic one that times out quickly so I'm not certain of the accuracy.  It's somewhere 
   between 127 and 141.  I think I've finally pinpointed the weight of the chair, and my
   technique is more accurate.  I'll weigh it again with Ken in it.

   
   

   125!  His weight is rather discouraging.  We had thought he was gaining weight and indeed,
   he does look more filled out.  Ken doesn't believe it, but it's pretty definitive.  
    
   

   Ken has been congested for the last few days requiring the suction machine to work a great
   deal.  Consequently, his mood has been somber and rather irritable.  I noticed an improvement
   today and he did not even need a suction when he went to bed, so maybe he is coming out
   of it.
   

   No suction this evening either!
   
   Thanks to all of you who have sent me information about similar circumstances.  We are trying
   everything.  
   

   Thanksgiving and everyone was here for dinner as usual except Kathy's mother.  She is 89 and
   didn't feel up to the travel this year.  She is in very good shape for her age, so maybe we
   can convince her to come next year.  Kathy is planning to visit her after the first of the 
   year.  Ken's son Brendan has had a bout with strep, but has recovered to the extent that he 
   was very lively today.  Tricia is about two weeks past her last (we hope) knee surgery and 
   is back in the wheelchair.  She has recovered well though and expects to be back on her feet
   soon.  
   

   Lazy day.  Nobody here did much but digest yesterday's feast.  Ken ate pretty well and again
   today, so maybe the weight gain we so hope for will soon follow.
   

   Ken is spending the night at home, giving him time to enjoy his family and affording a break for 
   Kathy.  Our assistant caregiver will go there also, so Tricia will have help.  We will take him 
   home on Thursday as well.  The plan is to have him at home more and more as Tricia recovers from 
   her surgery.  Eventually, he will stay.  We are looking at another round of rehab at  TIRR  
   after the middle of January.  Perhaps by the time he finishes there, he (and Trish) will be ready,
   with help, for him to stay home full time.  It's a lot of work for us (Kathy especially), but I 
   know we will miss having him around and we will go through a repeated bout of empty nest symptoms.  
   I felt a little of that today when I arrived home and remembered he was gone for the night.
   
   

From Kathy

I'm taking over Steve's blog for a day to offer my thoughts to the many people who read it.  I am 
humbled by the number of people who comment to me about something in the blog, saying they read it 
frequently, some say daily.  

In this season when it is common to think about connections with others and what the next year holds, 
I'm doing just that, when I'm not over my eyeballs in tasks.  There wasn't a clue last year at this 
time that all our lives would be turned upside down.  As Ken has said several times, " In the blink 
of an eye..."

My heart is filled with thanks to so many people.  

To Steve's brothers, Nick and Dennis, who dropped their lives at home and arrived in the weeks 
following the accident to lend support and help.

To all of you who contributed to the Ken Warr Fund, know that  it is being used to pay for the 
continuation of health coverage through COBRA and may even cover a bit of the modifications needed 
for Ken's house.

To all our square dancing friends who supplied home cooked meals for several weeks after the accident.  
It was such a pleasure to arrive home, open the fridge and find meals from the best cooks around.  

To our many friends and neighbors who have offered to do whatever we need.

To those who gave advice after reading in the blog about a problem Ken was having, we appreciate the 
time spent thinking about the issue and sharing your knowledge.

To those who pray for Ken and his family and have even gotten prayer groups involved, we know you are 
being heard.

And to problem solver Steve, who rounded up the wheelchair and the van, and who continues to work so 
that we are able to help as much as we do.

All of you have a wonderful holiday season and a fantastic New Year.  

Kathy
	

   You can probably sense my discouragement at the lack of noticeable progress in Ken's condition. 
   I quit writing because I believed there was no news.  Perhaps there is improvement and I am just
   too close to notice.  Kathy's entry yesterday has spurred me back to it.  I resolve to write 
   something every day, no matter how inane.
   
   Ken's spirits remain upbeat, but I find myself feeling that might not be the best attitude.
   Like the spasms in his legs that are constant and powerful, I want him to physically take control
   of them and make them obey his will by sheer determination.  Every time he repeats he has no
   control of them, the back of my mind attributes that to a lack of will.  But that's my problem,
   not his.
   
   

   Ken stayed in bed most of the day.  His physical therapist recommended it as a way to allow the
   sore on his back to heal.  I thought the sore was from the bed, but she seems to think the chair 
   may be causing it.
   
   

   Sense of humor is still there.  Ken jokes about his wild legs being controlled by the evil
   "knee brain" (the heterotopic bone growth in his right knee.)
   Today he worried that his left leg might be growing something similar.  Comparing the two,
   I don't see it.  I think it's just his weight loss has exaggerated the look of his normal
   knee.
   
   

   It's Thursday and Ken is with his family for the night.  Home is wonderful therapy for, not
   only him, but also for his mother and me.  The reality of it all hits home in the form of
   exhausted relief -- especially for Kathy.  But .... we miss him.
   

   Ken and I enjoyed "helping" the Rockets to gain another victory over the lowly Golden State
   Warriors.  
   
   His physical therapist agreed with him when he asked her about "bone" growth in his left knee,
   but he agreed that she has a knack for telling him anything depressing and negative about his
   condition.    
   

   Ken and I were watching the game and Kathy was puttering around finishing her never-ending chores
   listening to a book tape with her noise cancelling headphones.  I answered the doorbell.  The
   neighbors broke into song with carols for us.  Knowing that Kathy would enjoy it most of all,
   I left the door open for Ken to hear and set out on a search for Kathy.  She had gone to the 
   garage for something.  Minutes later when she had returned, I waved her to remove the
   headphones.  She flashed an annoyed look, but motioned just a minute.  Afraid the caroling 
   would end, I yelled for her to take off the headphones (I'm sure the neighbors could hear 
   above the song.)  That produced the nastiest countenance ever seen by man that melted instantly 
   when she heard the singing.
   

   Ken's home again for the night so we could go to a Christmas party.  It was fun.
   

   Nice to have Ken back.  His attitude about everything is really good, at least overtly.  No
   telling what's going on behind his eyes. 
   

   It's much easier to manipulate and exercise Ken's legs when he has not been been in his chair
   all day.  He stayed in bed all day -- another try at healing the sores -- and was only up long
   enough to watch the game with me,  but not in the chair.  In a recliner instead.  
   

   Today's exercises were just as easy as yesterday.  We found out he's had a bladder infection.
   Such infections make the spasms more intense and maybe they're slacking.
   
   Ken described the sensation around the awareness of his legs.  Although he can feel and localize
   touch, when he can't see them they sometimes feel as if they are in an entirely different 
   position than they actually are.  
   

   Ken's home again this evening so we could go dancing.  Unfortunately, its going to be more of
   a burden for Tricia.  Her back has been hurting and the doctor is saying it may be a ruptured
   disk.  Thankfully, she has help from Ken's best friend Paul.
   

   Sitting in the recliner definitely makes Ken's legs more relaxed.  After the game tonight, his
   exercises were a breeze.
   

   Weighed him today because he seems to be filling out.  139!  On his way back from the low of
   125 on November 22.
   

   Ken was in the chair all day today, but his legs seemed just as flexible as yesterday.  Maybe
   I don't know what I am talking about.
   

   Ken's daughter Alexis stayed here with us today.  She will stay until Wednesday and Ken will
   go home to spend Christmas with his family.
   

   Wow!  What a year!  My brother Barry, wrote me an email last week that is perhaps the capper.
   His son Scott's wife Paula died suddenly, followed by a stroke of his own.  Barry said it was
   a "small" stroke but Scott has lost the use of his right hand and arm.  I took the news with 
   little reaction as if it were business as usual.  I guess I was just numb.
   
   2008 is over in a week.  It can't end too soon.
   
   

   Ken's home and the house seems empty.  I'd rather he'd be home of course, but one gets used
   to a presence.
   
   

   When Kathy and I would visit Ken in the hospital every day, sometimes all day, people (doctors,
   nurses and sometimes other patients or their visitors) would praise us for our devotion to 
   him.  I was puzzled.  The only thing I could take from the constant praise was wonder that 
   perhaps others (maybe most) have no such sense of duty.  How could such a seemingly natural 
   gesture (you love your son, you're there for him) be at all praiseworthy.  It should be a 
   natural extension of life -- it's what you do.  The primary responsibility for parents is to 
   their family.  
   
   Tonight, sadly, a gremlin poked its ugly head up and grabbed me.  It takes about an hour
   and a quarter to get him into bed.  He wanted to stay up a little longer and watch one more
   video.  I did too, but it was late and I was tired, but since it was Christmas and he is 
   the injured one, I relented.  It took longer than usual to get him ready and Ken seemed 
   determined to stymie my every effort to quicken the pace.  He wanted more ice cream after 
   the small portion to ease his medicine down, there were many more wrinkles in the sheet 
   under him, he slid down in the bed more often than usual -- complaining all the while.
   
   On the other hand his motivation was probably only my obvious desire to hurry.
   

   I wrote an entry yesterday, but it apparently did not update.  It was pretty lame anyway.
   We had our entire family together for Christmas today.  The food was lasagna provided
   by one of Kathy's knitting friends, Sharon.  It was great -- thanks Sharon!  We had a fun
   time as usual.  Thanks also to the Waltons for the wonderful cookies and other goodies.
   

   Kathy, the grammar teacher keeps catching my its errors (it's  it's  for the contraction 
   for it is and its for possessive.  I can never get that straight-- oh well, now I will.)  
   Sometimes I long to have lived in the simpler pre-Webster era of the eighteenth century 
   and earlier when you could spell anything any way you darn-well pleased.  Of course there 
   were few who could read it then -- and there were a few more drawbacks as well like a month 
   and a half to London, six months New York to Houston (Wait, there was no Houston.) and the 
   closest supermarket -- never.
   
   Ken is beefing up.  I'll weigh him and report tomorrow.
   

   Weight has not changed from last time!  I guess I was over-optimistic or the weight on Dec.
   20 was incorrect.  I'll keep weighing him weekly.
   
   On the positive side, I pulled him up in the chair by grabbing under his arms.  Previously
   that would have been excruciating, but he hardly noticed. 
   

   On May 12, only a week after the accident, I reported "I took his hand he pulled with such 
   effort that he slid himself off his pillow."  I'm trying to recall if it was his hand I was 
   holding or his wrist.  I know he had no grip then, but it seems to me he had strength in his 
   wrist.  Now he has little strength in it and I don't believe he could pull with such great
   effort.  Perhaps the result of the secondary damage that is said to occur in the central
   nervous system.
   
   

   Watched a video online about Billy Price whose injury seems to be about the same 
   as Ken's, but ten years down the road.  It seems hopeful.
   

   2009!  Hooray!
   

   Now a new worry.  Taxes!  This is a whole new situation, but with some research I've discovered
   it may not be as complicated as I first thought.  As parents, we can exclude $12,000 per each of
   us to each of our children from gift taxes.  Of course, that will not cover it all, but we can
   also take a medical exclusion on anything paid to an institution that will aid in Ken's recovery
   or "mitigate" his suffering.  I'm not certain what that will mean entirely, but we will just list 
   it all and let the IRS sort it out.
   

   Past midnight and nothing momentous to report.  Ken's legs have felt more resistant to the 
   stretching and exercises over the past few days.  Perhaps it's just a passing phase and they
   will loosen up soon.
   

   I just realized that I skipped yesterday.  I had to go back to work today, so I guess I'll just
   use that as an excuse.
   
   Things are looking up for Ken, sort of.  I taped a felt pen to his hand so he could sign his
   mom's birthday card and you could actually read what it is.  Although his fingers are as stiff
   and unmoving as always, he has better control in his wrist and shoulder.  Perhaps, with more
   physical therapy that will continue to improve.
   

   Weight is still about the same, but I'm more confident in the accuracy because I got a new scale.
   I rigged up some doodads for his hand to hold a pen and he does pretty well with it, although
   he's still weak and tires easily.  He has been feeding himself with a fork attached to his
   hand also.
   

   Ken is really enjoying feeding himself, but he makes such a mess Kathy is jokingly tempted to 
   remind him of his toddler days.  Actually, she says it isn't that bad, but it really is a 
   process of relearning so many things he has long taken for granted.
   
   He went to the doctor today and discovered the reason for the stiff and spasmatic legs -- he has 
   another bladder infection.
   

   Ken spent the night at home with his family and we are finally getting back into our square
   dancing.
   

   His legs seemed a little looser tonight, so maybe the infection is going away.
   

   Ken is starting to really get the hang of feeding himself.  Despite having no control over his 
   fingers, he can now manipulate a fork or spoon with little problem.  And no mess at all!
   
   His legs were extra tight and spasmy tonight.
   

   I'm still here.  Got Ken a laptop computer to help rehab his hands and arms.  Hopefully, he 
   won't lose interest in it.
   

   I think the laptop will work.  I might have to revert to XP instead of Vista.  I have not used
   Vista before and it seems Microsoft is up to its old tricks of making "old friend" functions
   obsolete and therefore summarily disabling them.  It's funny (more like frustrating) I teach
   programming and am considered to be an "expert" about computers, but when I upgrade, I seem to
   have more trouble than anyone with the new operating system.  
   

   
   Ken worried that the heterotopic bone growth in his right knee, is causing his right
   knee to be stiffer than the left.  When I exercise him that seems to be the case.  I work that 
   one a little more than the left.
   

   We take Ken back to  TIRR  tomorrow for his evaluation of progress and a determination 
   of when he will return for his second rehab stay.
   
   

   The evaluation went as well as could be expected.  Ken will return to TIRR on February 20 and 
   stay about a month.
   

   Ken went home again this afternoon, so the house seems empty again.  Not to worry the whole
   family will stay the weekend with us.
   

   The house is full again.
   

   Ken's legs seemed extra stiff and spasm prone tonight.  A new sensation presented itself last
   night and continued today.  He feels like his legs are hyperextended (especially the left) 
   even though they are bent slightly at the knee.  He says there is no pain, only an extremely
   uncomfortable feeling.  The exercises seem to relieve the feeling, because he is much more
   relaxed afterward. 
   

   Actually much better this morning.  His legs were more relaxed during exercises.  The date 
   to return to TIRR is firm: February 18 and he'll only stay about two weeks.
   

   Home again tonight.  Ken's personality has fully recovered and the pain seems much less.  Now
   if we could just see a glimmer of progress toward controlling his body.
   

   The phenomenon of Sunday (hyperextended legs) is growing worse.  His left leg fights to 
   straighten out, but it feels to Ken like a really bad cramp and he wants to have it bent.  I
   had a bad cramp in my calf today during my workout (my toe pointed and even my entire weight 
   would not straighten it), so I can identify with what he must be feeling.
   

   Ken is home again and we are on our way to dancing.  Still mixed feelings, but it has to be 
   good to get back to a semblence of normalcy.
   

   Its my birthday, but there's little joy as I recall this one (68) was my dad's last and 
   the near certainty that Ken will never reach it.  Even with miraculous recovery, those with
   spinal cord injury seldom achieve longevity near the average.
   

   We keep trying gadgets for him to use on the computer and others for the everyday tasks that
   you and I take for granted.  He gets a little testy at me when I force some other jimcrack 
   thingamajig item at him to try.  I think the pvc pipe and velcro drink holder is a hit,
   however and I am determined get something to help augment the touchscreen soon. The
   modified mouse is getting close. 
   

   Tomorrow I will begin work on a device that will enable Ken to control the TV remote.  The
   wires for the hospital TV were fine there, but, since we have Dish network and a DVR, there
   are so many buttons that the wires just made it look like a multi-legged spider and it was
   impossible to use.  I have some ideas.
   

   Ken's cramps are growing worse every day.  With the cramps has come additional pain to his
   shoulders and severe headaches.  Neither leg will straighten completely and the left really 
   tightens and pains him when we try.  It may stem from problems with his bladder.
   
   It is a fact of living with spinal cord injury that the natural elimination systems no longer
   function.  We must aid urination with a catheter tube; we have a new device with an extra 
   long tube that may not facilitate complete evacuation.  This evening while we were putting
   him to bed, he began leaking.  Kathy cathed him immediately, but when he had finished, she 
   tried again with one of the older, shorter tube devices and got a great deal more.  Maybe 
   that's the solution to both problems.
   

   Ken went home for the night this afternoon, so it'll be Wednesday before we know if the cramps
   have eased off.
   
   

   His legs were a little easier to work with tonight.  He thinks they are better too.
   

   I guess I went into sleep mode for a couple of days.  Sorry.  I had no idea I missed Thursday 
   and Friday until I saw this today.  You'll be happy to know that Ken's legs spasm are settling 
   back down.  Both legs straighten out completely and the cramps are nearly gone.
   

   Weighed Ken today.  141!  Up some.  Hopefully, gains will continue on a regular basis.  Spasms
   and cramps were back this evening, although he says the they were not so bad during the day.
   

   Man! I missed another day.  The days are flying by.  Cramps in Ken's legs are still bad at 
   night.  He cannot bear to have his left leg straighten out and it seems that is all it wants
   to do.  
   

   Ken's cramps and spasms are much worse tonight.  Good news: research with stem cells is moving
   forward at a frenetic pace since President Obama's election.  Apparently, he is making good on 
   that promise.  The first clinical trial with stem cell treatment for spinal cord injured patients
   is underway.  Ken will spend the next three days at home, so I'll report more then.
   

   Here is a video of Dr. Carlos Lima (Portugal) who pioneered the use of adult 
   Stem cells from the nose to treat spinal lesions.
   

   Ken was sick today.  Probably just a normal bug, but when you are spinal cord injured nothing
   is routine.  It threw him for a major loop.  He and Kathy spent most of the afternoon and evening
   in the emergency room waiting area.  They made it home after midnight.
   

   He stayed in bed all day.  I think it helped because he seems to be past the bug.  We'll see for
   sure in the morning.
   

   The rest helped.  Ken is a great deal more lively today.  I'll stop short of saying he's cured, but
   he is better.  We'll see how the exercises go.
   

   Wellness has set in except for the spasms and cramps, and they may be with him until he regains
   control of his legs enough to exercise for himself.  We are well aware that may never come, but
   we remain hopeful.
   

   Nothing has changed.  
   
   

   I have been asleep at the switch.  Sorry.  The spasms and cramps are about the same.  Ken will 
   be going to a specialist at TIRR soon to see what is going on.  
   
   

   Ken has been talking more about getting treatment overseas.  One of these xcell-center
   in Bonn, Germany seems promising, but it's hard to know.  Their results though not a cure, 
   seem too good to pass up.  Are they too good to be true? 
   
   

   Tricia is back in the hospital.  She had an irregular heartbeat and low blood pressure which turned
   out to be pneumonia.  We do not know how long she'll be down.  Ken will be seeing the urologist on
   Wednesday.
   
   

   Tricia is feeling much better today and we expect she will be out of the hospital in a day or two.
   Ken's about the same, but tomorrow he goes in for his date with the urologist. 
   
   

   I was wrong -- again!  Ken didn't see his urologist today, that's Friday or Monday.  He got CAT scanned
   today.  His plumbing is clearly out of whack, though and he really needs it examined.  Hopefully, it's
   not stones.  I remember how painful they can be from my dad's experience. 
   
   

   Ken seems to be over the urinary tract crisis.  He seems to be in great spirits.  Kathy shaved off
   his beard, giving him a new and fresh look.
   
   

   He can detect when his bladder is full.  It doesn't seem to be the normal way we all do, but until
   now, he has been unable to tell at all.  That's got to be an improvement.  Tricia went home 
   yesterday.
   
   

   Stayed in bed all day.  Because of his injury, his body cannot regulate temperature.  One minute 
   he's hot the next he's feeling like he'll freeze.  Last night and today were especially bad.  Lack
   of sleep exacerbated it.  As a result, he's had a terrible headache all day.
   

   Ken is better today.  Not over it, but much improved.  Kathy was so concerned about low blood 
   pressure and low urine output this morning, that she thought we should take him to the emergency room.
   When she put it to him, however, he said no and he got better from there.
   
   We filled out the medical information form for the  xcell-center today.  After looking at the 
   information on the web, Ken decided that doing something like that is better than nothing, especially 
   since it can be redone in the future.  He is really interested in getting back more function of his 
   hands.  The procedure will cost 7,545 Euros (currently $9,746.21) exclusive of travel expenses.  
   Insurance will not cover this, so the push for support for the Ken Warr Fund is on again.
   

   There were calcium deposits in Ken's kidneys and bladder.  Not quite stones yet, but they will
   schedule Wednesday or Thursday to flush his system.  Hopefully that will fix the problem.
   
   

   Ken is much better today.  We are happy about that.
   
   

   He got his system flushed today and got put on a special diet (several noes: spicy, fatty, etc.)
   
   

   In addition to the flush yesterday, Ken got a cath tube surgically implanted.  We don't have to
   do the periodic cathings, but I can't help thinking that it is another step backward.
   

   Ken is about the same.  Trish is still feeling the effects of her pneumonia bout.
   

   We started doing exercises again.  Instead of fighting against his spasms, I've found a way to 
   manipulate them so that the spasms actually cause the movements.
   

   The implanted urination tube apparently got kinked and caused a panic in us all.  It manifested
   itself in a tremendous headache and pouring sweat for Ken.  We, of course, had no idea what to do
   but our fumbling attempts worked, thank God.
   

   It's not over.  Ken stayed in bed all day with a residual headache and just plain wiped out
   feeling.  After I came home this evening, he had another episode reminiscent of last night, but
   not quite as bad -- Kathy's quick action stifled that.  She has been on the phone to doctors all
   day and is prepared to get him to the hospital quickly.  This symptom set called  autonomic 
   dysreflexia  is quite common with SCI patients. 

   

   It may be over.  Ken was up and alert all day, and though the headache revisited him for
   a while this evening, it was short lived.

   

   We thought he was past it again today.  He had a good day until about six PM when another of the 
   sudden headaches slammed in; not as bad (or maybe he's just gotten used to it.)
   

   Ken went home for the weekend.  I miss him.
   

   Trish called: Ken's blood pressure was low.  Kathy assured her that it was ok, the BP has been
   bouncing all over the place.  Very common with SCI.
   

   Ken had a rough time yesterday.  It was the headache all over again, but I think worse, but 
   without the sweats.  It was his son's fifth birthday and party, but he felt so bad he could
   not get out of bed.  Later in the afternoon he was relieved somewhat and we got him up to take
   him home with us again.
   
   Today was much better.  About five this afternoon he felt the headache come on suddenly.  I
   checked the urine bag and though it was only about half full, it was inflated with air.  After
   it was emptied, the headache disappeared.  Maybe we are on to the cause. 
   

   He has not had a bout with the headaches for two days now, so maybe we have a handle on it
   

   Went to TIRR for botox injections today.  They are supposed to reduce spacticity and seems 
   to be already working.  Ken was much easier to manage during exercises this evening.  
   Unfortunately, it works by poisoning and weakening muscles.
   

   I expected the spasms to subside some with each day after the botox, but, after a little on
   Wednesday, I don't notice much change.  This upcoming week he will go back to TIRR for two
   weeks for his follow-up, if their schedule allows.
   

   Some people from the state agency DADS will come by Ken's house to visit on Monday, so Ken 
   went home this evening to stay through then. 
      
   

   Kathy went to Ken's house this morning to help get him up.  The caregivers only
   come on weekdays.  She said he seemed to be starting a good day.
      
   

   Ken is with us again today, but he is scheduled to go to TIRR again Wednesday
   so we will have to visit him there for a couple of weeks.
   

   Ken will not go to TIRR tomorrow or maybe even a few days more.
   They have to wait until there is a vacancy and there seems to be some sort of problem
   with insurance.  His spasms are raging today.
   

   Still no word on TIRR.
   Ken stayed in bed all day today -- not feeling well.  After I got home, he got up for 
   dinner and the Rockets.
   

   This is Kathy.  Steve has been busy for the last several days, now that we're well into
   the track season.  I volunteered to update the blog.

   I took Ken home Thursday afternoon for an overnight stay, then got a call Friday morning 
   saying that a bed was available at TIRR, but Ken needed to check in by 1:00.  Well, we
   made it.  The reason for the deadline is that they begin testing, questioning, observing,
   etc. as soon as he arrives. People converged on him for the remainder of the day, part of 
   Saturday, and will continue on Monday, before they set up goals for Phase Two.  They expect 
   him to stay at least two weeks to complete the goals, and longer if he needs a few extra 
   days.  Listening to the detailed questions and responses from the doctors made me feel 
   confident that Ken is in the right place.  

   My life has suddenly become less hectic.  I don't miss the hard work, but I do miss Ken.  A
   nurse who was at TIRR when he was first there told me today how much she enjoys Ken.  She
   said he is just a nice person.  
    
   There is a downside to having more time.  Steve agrees that when you have time to think,  
   a dark cloud descends.

   Kathy
   

   Visited with Ken for just a few minutes after school today.  His family was there and I
   wanted to give them time together.
   

   Kathy was with Ken at TIRR when I arrived today.  It was dinner time for him and she was
   feeding him.  I have a cold, so I didn't get too close and left rather quickly.
   

   Kathy is off to Rhode Island to visit with her mother and I stopped by to touch base with
   Ken for only a couple of minutes.  They have put another cast on his right wrist to try
   to fix its hyperextension.  It's uncomfortable, but he's happy to have them doing something
   about it.
   

   They removed Ken's trach tube today and covered the hole with gauze and transparent packaging
   tape to keep a seal.  The tape expands with each breath and I joked I expected a ribbet.
   He will be released from TIRR on April 16.
   

   Ken had a particularly bad spasm in the night which resulted in a groin pull.
   

   Trish and the kids visited with Ken this afternoon.  I didn't go in until six.
   

   Ken was sick today and only stayed up for hour.  The doctor thought it was a reaction to his
   medication.
   

   He stayed in bed again today.  They have narrowed the culprit down to a new medication they
   were giving him for spasms.
   
   

   Ken was much better today.  I picked Kathy up at the airport and we went straight in to see
   him.  I noticed the improvement immediately and he found some humor in the new orderly.  He
   asked the guy to roll him from his side to his back and the novice came up to the bed, picked
   up a pillow and ventured "There, roll over."  Ken said after he left, "I don't think he 
   understands where he is."
   
   Kathy mentioned after not seeing him for a week, it looks to her like he has lost some weight.
   

   Even better today!
   

   I had several things to put in the blog yesterday, but I forgot to write it.  Now I've 
   forgotten what the things were.  Oh! Ken shaved himself and brushed his own teeth.  His 
   improved coordination with his arms enabled him to use an elastic holder strapped to his
   hand.  He still has no use of his hands and fingers, but this slight improvement was a
   major morale booster for him and us.
   

   When we arrived today, Tricia and Brenden were already with Ken.  We met them coming out
   the door and went with them to the sitting area.  It was a nice visit.  Ken will be 
   going home for Easter next weekend.
   

   Got there in the middle of Ken's dinner.  He's fine, and I didn't stay long.
   

   Some welcome news today.  Ken will go home early--Thursday, this week.  The doctor is 
   suggesting Ken get an implanted baclofen pump to control his spasms.  In about two weeks 
   they will inject him with a sample of the medication intended to determine his suitability.
   The pump (I understand it's about the size of a hockey puck) will be implanted surgically
   in an outpatient visit, if it will work for him.
   

   Ken went home today.  He is happy about it and our involvement in his care will be
   diminished.  While that is easier on us (especially Kathy), I am already feeling a renewed 
   sense of despair.  The year that SCI patients can expect some natural inprovement is
   only three weeks from its term and Ken is a long way from a condition that can afford
   a reasonable quality of life.  His doctor has recommended against the foreign stem cell
   treatment, suggesting instead he wait for the US FDA approval of some domestic procedure.
   Geron Corporation has recently been given FDA approval to begin clinical trials with
   their procedure, but an actual treatment is well down the road.
   I am impatient.
   

   Ken has settled in quite well.  His spasms have improved quite a bit, but the medicine
   he is taking is very bad for his liver.  It will be two to three weeks before they can 
   implant the baclofen pump.  Hopefully, that will be better for him.
   

   This was the first day since August I haven't seen Ken.  Kathy went to his house this 
   morning to help a little.  She reported all's well, so I think we'll be giving them
   some space for awhile.  
   

   Went by Ken's house this afternoon to install wifi.  He is much more comfortable at home
   and the medication for his spasms seems to be working well. 
   

   At Ken's for more than three hours installing DSL and wifi (Yes, a continuation of Tuesday's
   work -- Nothing's ever easy.)  Ken slept for almost the entire time I was there.  The
   medication is knocking him for a loop.
   

   Ken got a new caregiver today for the second time in a week.  The short term one gave pause.
   Ken and Trish were not happy with her.  Kathy was there this morning to welcome and train the
   new one.  She thinks that despite the tattoos, she'll be fine.
   

   The caregiver does not come on weekends, so I was there this morning to get Ken up.  It's kind 
   of nice to see him on the good days.  Exercises went well, and he seemed to be gearing up for
   a great one.
   

   News today.  Unfortunately, not so good.  Not earth shaking, either -- thank God.  Ken has had
   a tube implanted in his bladder for a few weeks to try to control the urinary tract infection
   that had been nurtured by manual cathing.  The tube connection malfunctioned on Friday and 
   the necessary manipulation to reimplant it apparently caused a new infection.  It got so bad
   today, Trish had to take him to the emergency room for treatment.  We think they got a handle
   on it. 
   

   A day later and all's well.
   

   Went by Ken's this afternoon.  He seems to have shaken the effects of the infection.
   

   Ken's implanted tube broke yesterday.  He will go in Tuesday to have the remnants removed and
   have a new one implanted.
   

   This morning Ken told me yesterday was kind of bad.  He felt tired and a little sick all day.
   Today he felt much better when I got him up and the spasms were so subdued that the exercises
   were relatively easy.  I can feel his legs get a little stiffer each day, however and that
   worries me.  The heterotopic bone growth in his right knee is a large lump on the
   inside.  I think that hinders the flexibility -- it refuses to straighten.  The left leg is
   just the opposite.  It has a mind of its own that believes it ought to be straight always,
   and though it does reluctantly yield to pressure, when it is released it springs out again.
   At least it doesn't feel so much like a cramp to him.
   
   He said he felt better, but after I got him in the chair, he promptly fell asleep for more
   than a half hour.
   

   Good again today.  He said he felt a little bad in the morning, but by the time I got there
   after school, he was chipper.  We sat out in the garage and enjoyed a gully-washing, tornado-
   threatening Houston thunderstorm.
   

   I didn't realize I hadn't written since Monday.  The "whatever" pandemic flu caused a turmoil
   in regional and state academic and athletic competition and took my mind completely away.  
   
   Ken was thrilled today that he managed to dial his cell phone himself with the help of a
   device I made for him.  Still no finger movement, but his arms seem to keep getting stronger.
   

   More crisis!  The implanted tube again.  He got a new one on Tuesday, but it seems to have 
   malfunctioned today.  Kathy took him in to the emergency room this evening.  Hopefully, it can
   be quickly unplugged and he'll be back home quickly.
   

   One year!  Not an anniversary to be relished.  In the dim past of a year ago when they told us
   Ken would be out of work for more than a year, it was somehow hard to believe.  Surely, we 
   thought, there would be some miraculous recovery and it would all be over and we'd look back
   on it as a barely recalled bad dream.
   
   Ken is back with us for a couple of days while the flooring at his house is redone.  The 
   difficulty of yesterday turned out not to have been a blocked tube, but, maybe worse, an
   infection and he is in a lot of pain -- mitigated mostly by medication, however.
   

   Pain was not as bad today.
   

   We were told there would be ups and downs, but you still feel a shock when the next pit
   looms.  When they removed Ken's trach tube, we were told the hole would close and heal within
   a few weeks.  After a month and ten days the hole is still gaping.  It's sealed with a bandage 
   covered with transparent packing tape.  Despite that, it leaks breath making it difficult for 
   him to talk and, perhaps more important, to cough up secretions.  The pulmonologist told him 
   today, the hole probably would not heal because of inhibiting scar tissue and recommended 
   reinsertion of a trach tube so that the secretions could be suctioned.  Ironically, the 
   foreign body of the trach tube stimulates increased secretions.  Eventually, plastic 
   surgery can close the hole, but meantime it seems like he is entering a lose/lose spiral.
   

   He was supposed to get a new trach tube today, but the doctor's office did not call back
   with an appointment.
   

   The bottom dropped out of the pit!  Ken has pneumonia and is back in intensive care.  Don't
   know how long the stay will be.  Kathy is low key about it--she thinks it won't be long 
   because the doctors don't seem all that concerned.  She also thinks he's in ICU only because
   he's tetraplegic who bears close monitoring.  I have to admit, I'm also not taking it too
   seriously because he seems little affected and is upbeat.  But it's pneumonia! And 
   it's ICU!
   

   Perhaps my emotions of yesterday were the Shakespearian "Much Ado About Nothing" -- Kathy is
   now saying the doctor wants to try leaving the trach tube out and if he needs to be suctioned
   the tube to the machine can be inserted into the opening.  It may hurt him some, but it's much 
   preferable to increase secretions.  The pneumonia was not serious and should clear up quickly.
   

   Ken came home again today.  Despite thinking he slept well last night, he was really tired 
   this morning.  He seemed to gain strength as the day wore on.
   

   Went by to check on Ken after school today.  Not much to report on.  He's feeling slightly 
   better.  That's good news, isn't it?
   

   Spent a lot of time researching the baclofen pump the doctors want to implant in Ken.
   There are some dangers.  
   

   Ken has decided to go to Germany for the adult stem cell treatment at the x-cell Center 
   
   

   The DADS program has finally been approved for Ken, but the "medical aide" they sent him this 
   morning left something to be desired.  Kathy got a call this morning from Trish saying the 
   girl they sent had absolutely no experience and no instruction about what she was supposed 
   to do.  Kathy went over and began her training.  She will go again tomorrow and Friday. 
   
   

 
   Ken went to the emergency room to deal with a tremendous amount of pain.  It turned out to be 
   only a continuation of the urinary tract infection.  The doctor prescribed another pain killer 
   and sent him home with an admonition to wait a little longer for the antibiotic to take effect.  
   Every time his spasms deliver more of the mounting pain Ken delivers another oath (not out loud 
   -- thankfully) and swears the doctor doesn't know what he is talking about.  About 8:00 PM he 
   felt a little less pained and Kathy brought the van with his wheelchair.  In the chair, however, 
   the agony returned briefly such that he didn't want to leave.  In fifteen or so minutes it 
   subsided some and he changed his mind.
   

 
   The trip home last night was rough on Ken, so Kathy stayed the night with him and he actually 
   felt better.  The morning told a radically different story.  The pain roared back and brought 
   fire to his legs with it -- a classic symptom of neuological pain.  Another ambulance
   ride to the emergency room -- this time to the main hospital, Memorial Hermann in the Texas 
   Medical Center.  Kathy rode with him and I arrived after school.  Despite medication 
   administered there, the pain was only slightly diminished and it fluctuated, spurred on by 
   bouts of spasms.  It was a busy day in the ER (one guy was brought in with a gunshot to the 
   head) and Ken didn't get a bed until about 9:00 PM.  He will likely stay for the weekend where 
   they will hopefully find the key to manage his pain.  Each specialist has his own theory as to 
   the cause of the pain.  Suspiciously, none of them believe it's in their field. 
   

 
   I had to be in Waco for the regional track meet today, so I didn't get in to see Ken.  Kathy
   reports his pain is much diminished -- whether that's a result of the new combination of 
   drugs or an improvement in his condition remains to be seen.  She was with him much of the
   day.  Uncharacteristically, he talked her ear off.
   

 
   More crisis.  Kathy and I got to the hospital a little after noon.  Ken was in pain earlier, 
   so they gave him not only more medication, but a different kind as well and he seemed to be
   more comfortable.  About 2:00, Kathy took a break and stepped down for a bite while I kept
   him company.  It wasn't very long before he went to sleep.  I was thinking "good!  The sleep
   can't be bad for him, and better, he's not feeling anything.  After about 20 minutes the 
   nurse came in to check on him and became slightly concerned.  His attempt to wake Ken was 
   futile and he invited others into the room to push, prod and consult.  I was hearing "pain
   medicine", "low blood pressure" and "no more medication until it comes down."  They all 
   bustled around for a few more minutes, but settled down and left me and Ken alone.  Not 
   long later the activity ratcheted up again -- this time in ernest.  The resiratory technician
   came in on what I believe was her routine visit, and became visible alarmed.  She was saying
   things like "hot", "pale", "pasty", and "not at all like he looked this morning."  (I hadn't 
   noticed and even though I looked closely, I still didn't see a difference -- perhaps it bagan
   a while before I came and the change was so gradual...?)  She really mobilized the troops
   and Ken's room was bursting at the seams with scrubs clad figures surrounding him and a
   rapid response cart.  Kathy came back in the middle of all this, and though I couldn't see 
   her -- she was on the opposite side of the writhing humanity -- I could feel her emotionally.
   
   The decision was made to move Ken to another room where he could be more closely monitored.  
   After the move Ken, regained consciousness stuck smack in the middle pain killer induced
   delusions. 
   

 
   I had to go to Austin yesterday for the annual Texas High School Academic Championship and 
   did not carefully check Sunday's entry, so I left you with some typos and a mystery.  Sorry. 
   They found klebsiella bacteria in his urine and we're back to wearing gowns and gloves
   when we visit him.  A trach tube has been reinserted and Ken can talk more easily.  He is 
   still feeling the pain in his legs, but they seem to have gotten a handle on his medication 
   and he is quite alert.  He will stay in the hospital until they get control of these two
   issues.
   
   
   

 
   Ken failed the "swallow" test.  His mouth has been really dry and for some reason he is not
   able to control the muscles of his esophogus to get anything (even pudding) down.  The cause
   is not known, but they will continue to test. 
   
   

 
   This will be henceforth be known as the infamous "day of the swallow/non-swallow test."  The
   test was supposed to come early this morning, but when I arrived at 5:00 PM, it still had not
   been done.  Meantime he was not supposed to have anything to eat or drink.  On top of that,
   the trach tube inserted in his throat was left uncapped because "they did not want to lose 
   the little plastic cap."  Without the cap, he has little pressure to cough and it is very 
   difficult to talk.  The gasping dried his mouth out even more.  
   
   I'm thinking "Is he going to starve or wither from thirst?"  None of it made sense.  About
   a quarter to six, his doctor came and began putting into words all the things I'd been
   thinking.  "They don't want to lose a 25 cent plastic cap?"  he questioned the air with
   disbelief.  He got the cap and tried several ways to put it on Ken's trach.  No matter
   which  way he turned it, it wouldn't fit!  "I'm not good at figuring these things out."
   he muttered several times -- not inspiring much confidence in me.
   
   He did allow Ken to have some water and when we left it was with his promise that he could
   have some Ensure and perhaps even some pudding or yogurt.  We were also assured that the
   swallow test would come, if not today, at least by tomorrow.
   
   

 
   The fear creeps back.  Kathy was in the waiting room when I got there because Ken was asleep.
   And he had been asleep nearly all day.  She was really concerned about his weight -- he gets
   thinner every day because he hasn't eaten.  The pain medication led to dry mouth, and now 
   his lack of nourishment makes his esophogus muscles weak, which prevents him from eating.  He 
   was finally brought down for the swallow test and he had not returned yet.   The Doctors keep
   insisting that a new PEG be inserted to feed him and I guess that will soon have to be done.  
   However, Ken has repeatedly said to us that he does not want it and if they keep pressing, he 
   will demand to go home.  Whether that is just bravado and he will relent, I don't know, but I 
   suspect he will have little choice in the matter if the doctors agree it's best for him.  
   Meanwhile, we'll just wait for him to return from the test.   
   		
   When he finally returned, lack of sleep last night kept him very drowsy, but he managed to tell 
   Kathy that he failed the test.  He woke up some before we left -- enough that we could have a 
   meaningful conversation with him and the nurse.  It turned out that there was an attempt earlier 
   to insert a feeding tube through his nose, but it was very uncomfortable and Ken balked when it 
   was less than half way in.  The nurse showed me a tube less than 1/8 inch in diameter commenting 
   on how small it was.  I'm wondering how large it would seem to her if it were inserted in her
   nose.
   		
   		
   

 
   Ken was pretty sleepy today too.  The nose tube was inserted this morning, but he had to wait 
   over three hours for them to interpret x-rays showing it was inserted properly before they
   could feed him through it.  He was very hungry, but happy when the "steak and potatoes" started
   flowing.  
   

 
   He is stronger and much more alert now that he is getting fed. Tomorrow he will get another PEG  
   (tube in his stomach) to further help his nutrition.
   

 
   The PEG is in, but in a huge paradox, he has to wait 24 hours before he gets fed through it
   AND the nose tube is gone so he is starving again.  He is craving double-stuffed Oreos.
   

 
   Ken got an MRI of his  Lumbar spine to determine if there were any abscesses that might be the
   cause of his pain.  Hopefully, that's it and they can target them to bring him some relief.
   I'll know the results tomorrow.  
   

 
   A small abscess was found, but there is no word on whether that could be the cause of the pain.
   Meantime Ken is very tired and a little sick with a fever of about 100.  He has been feeling 
   hot for the last two days.  Sitting here now in his room, I agree with him.  It is warm.
   Nevertheless, his doctor is talking about discharging him in the next couple of days.  He
   would be happy to be home, but if he is sick? 
   

 
   Ken's BP was very low today making very tired.  The pain continues, but the hospital staff keeps
   making noises about sending him home.  There is a fan in the room now, and he is much cooler.
   

 
   A young lady intern was given the task of explaining why the hospital was intent on moving Ken.  
   She explained in detail that "they" had performed a variety of tests to determine the cause of
   both the pain which sent him here and the loss of swallow response that occurred since arriving.
   "They" determined that all infection was gone and nothing else could be found to explaining it.
   By that logic, therefore, the pain had to be neuropathic, stemming from the original injury.
   Consequently, it was determined that Ken could either go home or be transferred to another less
   intensive ward of the hospital.  The primary goal was to get him back to TIRR and more rehab.
   Perhaps, she suggested, the baclofen pump that was to be implanted could also inject some 
   narcotic form of pain medication to control the pain.
   
   In addition to being wiped out by the constant pain, and the resultant lack of sleep, Ken is 
   reluctant to going home until something is done to get his pain under control.
   

 
   D-Day was relatively uneventful.  I went to Dallas for a track meet and didn't visit Ken at all,
   but Kathy was there for quite awhile.  He has been moved to another room, and seems to be doing 
   better.  He was more awake and even though they are gradually lessening the pain medication, he
   seemed to her to be in less distress.
   

 
   Ken was much better today than when I visited on Friday.  The pain is still there and constant,
   especially when his legs move.  Ken says the doctors are talking about a nerve block.
   I'm concerned about the possible detrimental effect, but if it gets him home with a better 
   lifestyle...
   

 
   There has been a tug-of-war between the doctors who admit they are not certain what is the best 
   course of action and the insurance company.  The opinions are: nerve block, more medication or
   "Grit your teeth and live with the pain -- it's a fact of life post spinal cord injury."  The 
   fourth course of action by the insurance company is more forceful: "Get him out of the hospital!"
   

 
   A new (to me) urologist, Dr. Bertini came into Ken's room while Kathy and I were there this 
   afternoon to try a nerve block.  He took about half an hour getting information and explaining
   the procedure and about five minutes to do it.  It worked!  Ken was pain free for about two
   hours.  The next step is to try a longer acting agent which sometimes is a permanent solution.
   If not, the nerves can be permanently deadened.
   
   My question is "Why wasn't this tried two weeks ago?"
   

 
   Ken is ready to go home.  They took the next step -- an injection that will last between eight
   and twelve hours.  The obvious question, however, is: what happens when the block wears off and
   the pain returns.  At home there is no doctor to administer the next dose.  It is possible --
   but I gather not too likely -- the pain cycle will be broken by this injection.  The next step
   will be permanent nerve occlusion, done by only a few specialists generally those dealing with
   cancer patients.  If he goes home, he is worried that he will be out of sight, and thus out
   of mind.  That thought prompted the decision to stay in the hospital until something permanent
   is done.
   
   I asked Dr. Bertini my yesterday question "Why wasn't this tried two weeks ago?"  The answer
   was rather ambiguous ranging from "...people scratching their heads ..." to "... not believing
   in that kind of treatment ..."  Apparently Ken's complaint is new to everyone and they couldn't
   quite believe what he was telling them. 
   

 
   Just when you think it can't get any worse -- it does!  Ken has been knocked for a loop by
   some kind of infection.  Temp is 102+ and he keeps falling asleep.  The medicos think it is
   a bacteria prevalent in hospital and thus resistent to antibiotics.  The nerve block lasted
   only about three hours, so we are looking at a more permanent solution.  They haven't yet 
   found a doctor who will do the procedure and it is up in the air whether they'll do it while
   the infection persists.
   

 
   The Temp is down -- thank God!  Maybe there is a silver lining -- the pain has diminished by
   a large factor.  Maybe the latest block has interupted the pain cycle (whatever that is -- 
    Maybe this?)  The cap on his trach has been removed so that oxygen 
   can administered more easily, and he is finding it difficult to talk.  Therefore, it is 
   difficult to assess how he is feeling.  He nods he is feeling better.
   

   Yesterday and today were about the same.  Ken seems depressed.  The reason became obvious
   to me today.  His blood oxygen level was below 85% and he was complaining about it being
   hard to breathe when I came in to visit him.  He had an oxygen line over his trach, but it
   wasn't doing the job.  The respiratory technician put him on a more direct line and by the
   time I left the level was above 95%.  All this need for oxygen is a puzzle to me.  After
   several months of needing none, all of a sudden, he cannot get his breath.
   

   It's piling on.  Ken was moved -- again!  Because of the blood oxygen level he needed closer
   monitoring, so the unit he's in now has nurses monitoring only two patients (MICU) as opposed to
   three in MIMU.  In addition, we have to wear masks as well as the plastic gowns and gloves
   when we visit.
   

   He seemed better today.  More work on clearing his lungs.
   

   Ken invited me to pull his leg today -- Something that would have caused him excruciating
   pain for more than a month now. No pain at all!  Not only that, but his legs remained calm
   and spasm free. He was eager for me to exercise his legs.  For more than six months his legs
   have fought any attempt at manipulation.  Today they were docile as a lamb.  From what I can
   gather, this is a result of a test to determine the viability of the nerve ablation that
   has been proposed.  If it  is  a test, he passed with flying colors. 
   

   The pain is back!  Whatever they did Friday has not been continued.  I know it was the week
   end, but the pain has not taken days off.
   

   They are continuing to try new medication.  The med du jour today is somewhat effective,
   but nothing is as good as Friday's.  You'd think that would be good enough and they'd continue
   that one.  Apparently its good enough, however, because he was moved back to MIMU again this
   evening -- a step in the right direction.
   
   Acronym explanation:
       MIMU - Medical Intermediate care Unit
       MICU - Medical Intensive Care Unit
   

   Ken was told the nerve ablation will be performed at another hospital.  I'm wondering if they   
   want to send him home and expect him to get an appointment for some time in the future.  The 
   pain was terrible again today and it would seem like cruel and unusual punishment to send him
   home with no intervention.
   

   Ken was breathing more easily and talking much better today because a bronchoscopy had cleared
   his lungs out.  The infection causing it turns out to be MRSA -- as you can see from the
   link, it can be difficult to beat.
    
   

   Ken is still talking more easily.  There's a possibility he'll come home next week.
   

   It's a real puzzle to all the doctors.  Ken's pain seems to be unique for spinal cord injury
   patients.  They have turned, therefore, to M D Anderson, the famous cancer Hospital.  This
   kind of pain is common to cancer patients, and they have procedures to deal with it.  Ken
   will be transferred there sometime next week for the nerve ablation.
   

   Yesterday, Ken was allowed to take nutrition by mouth again -- Ensure -- and he has been allowed
   to drink water all along.  This morning, however, he was sick.  Because he vomited three times, 
   all that was suspended -- nothing by mouth at all.  It was enforced vigorously and he has had no 
   nutrition at all since this morning at all.  Not by PEG or IV even.  He is hungry and thirsty.
   
   We are still expecting him to go home sometime next week and have the ablation at MD Anderson
   on an outpatient basis.
      

   I thought Ken was better today than he has been for a while.  Hopefully, that will continue.
      

   No more ICU forever!  Hopefully.  Ken was moved into a regular hospital room today and 
   expectations are high he will go home soon.
      

   Ken was asleep when I got there. When I woke him, he said he was tired and just wanted to sleep.
   Kathy said the earliest they could get him an appointment at M D Anderson was the end of July.
   I am in awe!  How can they let him suffer that pain for another month?
      

   Ken was wide awake this morning.  He is breathing more easily and his trach was capped so it
   is more normal.  He is still getting oxygen through his nose.
   

   While Kathy and I were visiting this morning, one of Ken's doctors brought in the doctor who
   is expected to do the ablation.  Their discussion was hard to follow, but did not approach
   anything new that I could hear.  There was a caution to Ken that the procedure would not
   likely take away all the pain.  The presumption then is that he will have to continue to
   take medication.
   

   Alexis and Brendan got in to visit with Ken today.  He was tickled to see his kids again.
   

   "I know what ten is now, dad!"  The medication wore off in the middle of the night,
   leaving Ken in greater pain than he had ever experienced (10 on the 1-10 scale).  For more
   than forty-five minutes it was so excruciating he was unable to call for help.  He confessed
   to me he cried the entire time.  I'm crying now just thinking about it.
   

   Kathy is staying the night with Ken.  We got some reasonably good news today.  He could go
   to MD Anderson as early as Tuesday for the procedure.  I'm confused about what it will be,
   but anything has got to be better than what he is going through now.  
   

   Ken came home (to our house) today.  The doctors are ready to perform the ablation or implant
   a baclofen pump and for some reason they cannot transfer him directly to M D Anderson (insurance,
   policy, or something?  I confess, I am confused.)  An ambulance brought him home and
   another will take him to M D Anderson tomorrow -- a hundred mile round-trip.  
   

   I am more confused than ever.  Ken went to M D Anderson today, but the doctor only talked to him 
   and set up an appointment for next Wednesday to do the evaluation for the stuff they're supposed
   to do.  He said insurance prevented him from doing any evaluation on the first day a patient is
   accepted by the hospital?  We'll take him back in a week -- probably by ambulance.
   

   Kathy surprised me today, saying I hadn't written one of these since Monday.  I couldn't believe
   it, I thought there was one every day.  When I checked, I was wrong. But only a little.  I 
   discovered there were two Mondays this week the sixth and seventh and Wednesday was missing.
   Well, there wasn't a Wednesday this week.  That's my story and I'm sticking to it.
   
   Ken is at least as good as he has been for a week, but the comedy of appointments, evaluations 
   and procedures continues.  The appointment for next Wednesday has been put off another week, 
   because the doctor who does the procedure (apparently the only one in Texas who does this) is 
   on holiday.  Meanwhile, Ken grits his teeth.  He says it doesn't seem so bad, but I think he is 
   just getting used to it.  He cannot remember what it is like to be pain free.
   

   Skipped another day.  Not much to tell.  Ken's the same.  We're gonna try to convince him to
   get back in his chair tomorrow.
   

   We'll get another hospital bed tomorrow.  It is difficult to handle Ken around the queen bed
   in our guest room, so that'll help us.  It's also good for the sores and the ability to raise
   the head.
   

   I think Ken is getting better.  The hospital bed arrived and we put him in his chair while 
   we were shuffling furniture.  He handled it pretty well.
   

   Ken didn't feel like getting out of bed today -- maybe tomorrow?
   

   Ken semed better today, but he still did not want to get out of bed and has enough tubes
   sticking out of him to rival a Borg drone.
   

   Not much to report.  Ken is looking forward to Monday and his MD Anderson appointment.
   Hopefully, that will leave him pain free.
   

   No news is good news!
   

   Tough day for Ken.  Lots of congestion.  Tomorrow is the appointment and with it the promise
   of less pain.  Cross your fingers.
   

   Another major disappointment!  When Ken was with us before, we managed to defeat the bed sores,
   but while he was in the hospital they came back -- especially the large one in the middle of
   his lower back.  The appointment today began with a successful test of the new medication, 
   but the doctor stopped short of doing the ablation because of the sore.  The sores have 
   improved since he has been with us, but not enough. 
   

   Ken was in a better mood today.  We pursuaded him to get in the chair and he joined us in the
   living room for a movie.  He was surprised at how easy it was for him.  We were all pleased.
   

   It was another relatively good day.  Ken seems to be coming back -- the pain is either less or
   he is just learning to cope with it.  
   
   We are fighting insurance battles again.  Kathy is really getting run down.  The daily helper 
   we used to get (we paid for) has not been coming because insurance (or the DADS program is 
   supposed to provide for a replacement, but it has been another comedy of errors with either 
   supervisors, physical therapists or incompetent (novices) showing up.  Mostly it is nobody -- 
   now we received a letter from the insurance company denying coverage for the one who did show up 
   (because he is outside their network?) -- even though they are the ones who arranged it.
   
   We need to go back to paying until it all settles. 
   

   We are determined to get him back in the chair tomorrow.  I know the pain will be there, but I 
   think it will go a long way toward healing the sores if he is out of bed.
   

   Today was a bad day for me.  I was all aches and pains -- funny how emotions can affect you
   physically.  I was thinking negative all day long.  It wasn't really bad for Ken, however.
   Although he still hurts too much to want to get out of bed, the pain somehow doesn't seem 
   so bad.
   

   Better today.  Ken was up in the chair and watched a movie with us.  The pain was definitely
   not so bad.  He has an appointment with wound management tuesday.
   

   Not too bad today, but the afternoon found his stomach a little urpy, so he didn't get up.
   

   The stomach upset continues.  Doctor from M D Anderson called to set up appointment for Wednesday
   and scheduled the surgery for the baclofen pump for Monday.
   

   The stomach upset continues.  Going to be difficult to get him to his appointment tomorrow.  
   hopefully, it won't affect the surgery on Monday.
   

   It's worse today.  Kathy was anticipating another hard charge to the hospital, but her fears 
   were calmed somewhat when the doctor returned her call with a promise of new medication 
   tomorrow.  The only concern was that Ken might be dehydrating.
   

   Even worse!  By this evening, Kathy would not be deterred.  The meds did not help, so we 
   packed Ken off to the hospital again -- hopefully not for more than a day or two.  I have
   bad visions of worsening bed sores and more.
   

   New hospital.  The rooms are huge by the standards we are used to.  Tomball Hospital
   is new.  What they have done initially is to control Ken's nausea by altering his medication.
   They have confirmed my assumption that the pain medication is the culprit in the queasy stomach
   and we are caught in another vicious cycle -- pain so medication -- medication so 
   nausea -- nausea causes him to vomit the medicine so pain.  In my mind, the only way to 
   break the cycle is to have the surgery to implant the baclofen pump.   
   Medication will be injected directly into the spinal column and, therefore cannot be vomited.
   
   Some of you have sent wonderful emails to Ken via the link below.  His eyes light up when he
   reads them.  However, some of you have had difficulty with the link.  If you do, just send
   your message to me swarr2@hotmail.com or his mother kmwarr@sbcglobal.net 
   

 
   Yesterday we danced in the frying pan -- today it's the fire!   The wound-care doctor took one 
   look at the bed sore in Ken's lower back and said with a sigh, "This is bad -- down to the bone."
   He wants to use a VAC machine to remove the dead tissue, but he is reluctant because it "may 
   expose the bone."  He went on timidly, addressing a question to me, "Does he have a concern
   about life support if it becomes necessary?"  Without thinking much about it I told him to ask 
   Ken -- we were standing right next to his bed and he probably heard anyway.  Ken immediately 
   answered yes he wanted it.  His anxiety level had to have jumped to its  max at that moment -- 
   I know mine did when I finally processed the implication -- but he appeared implacable.  I 
   immediately regretted allowing the blunt question, but on reflection it was probably best.
   
   Kathy and I had been operating on the assumption that the bed sores, although serious, were the 
   least of our worries.  Indeed when we had him at home from December 16 through April 9 we had a 
   feeling that healing was progressing satisfactorily using a "donut" cushion and constant turning 
   and bandaging with a special kind of pad.  In fact, Kathy and I agreed that by the time he 
   left to go home, the sores appeared completely healed and were not an issue.  They came back
   like a tornado in the month and a half he was at Memorial Hermann Hospital.  He told us the nurses 
   were not turning him at night but we passed it lightly assuming the health-care professionals there 
   would do nothing to worsen his condition.  And the doctors who looked at it said things like, 
   "That's not as bad as last time."  We thought they looked bad! When he came home this last 
   time we recognized the sores were bad and he had new ones on each hip, but we believed the same 
   regimen would again prevail.
   
   After reading about Decubitus skin ulcers and discovering that their infection was the primary 
   cause of the death of Christopher Reeve (Superman) my anxiety leapt to the stratosphere.
   
   This afternoon, Ken was taken to xray (presumably to determine the depth of the sores) and 
   afterward they brought in an air bed.
   
   This article about treatment adds to my disquietude.
   

 
   The shift in medication here has resulted in more pain.  The nausea is pretty much gone,but Ken
   says he prefers the nausea to the pain.  He should not have to make that choice.  It's Sunday 
   and the doctor is not here.  Even if he were, I think the only solution is the baclofen pump
   and the nerve ablation need to be done soon.
   
   His Borg assimilation continues.  There was a recomendation that a colostomy be performed to
   forestall contamination of his bed sores today. 
   

 
   The pain has not abated.  You know it's bad when his foremost thought during the three-hours 
   between turnings is dread of the next one.
   

 
   The biggest issue to day is whether or not to have the colostomy.  The jury's still out.
    

 
   Ken decided to do the colostomy and we are waiting in the surgery waiting room.  The doctor said 
   it went well.  He is in the recovery room, and will go to an IMU room tonight as a precaution and 
   tomorrow back to a regular room.  The anesthesia for the surgery has made him totally pain free.
   Hopefully, it won't hit him like a ton of bricks when it wears off.
   

 
   He seems to be recovering nicely from the surgery.  There is some confusion about when he will
   go to another hospital? room? come home?  
   

 
   Still don't know about a move, but the feeling is that home will be about four or five days.
   

 
   Ken went to a new room today, up a floor.  I guess for insurance reasons he will stay there for 
   about a week before coming home.
   

 
   Oops!  I was wrong again.  Ken moved to Triumph Hospital this evening.  
   

 
   Triumph was not so good for Ken this morning.  Ken was convinced that the nurses didn't care 
   about him at all.  The medication was off schedule again, and the pain was up to ten again.  Two
   reasons:  There were doctors, special nurses, dieticians and various others hovering around him
   for several hours and his regular nurse (the one responsible for medication) could not elbow
   her way through the crowd to get to him.  She also did not quite understand the medication list.
   I believe the attention was overkill -- an attempt to get everything just right for him.  Maybe
   they'll be less attentive tomorrow and he can get his medication in a timely manner.
   
   The bed sore doctor wants to keep Ken here for two to three weeks.  That's a disappointment -- 
   We had hoped he'd be home in a couple of days.  But, alas, the sores need to be healed before
   the surgery to remove the pain can be done. 
   

 
   Today was pretty good.
   

 
   Much better today!  The pain was much less and he ate a meal of solid food.
   

 
   Resistance is not necessarily futile.  The machine that regulates the flow of fluids into Ken's 
   arm projected an ear-shattering beep consistently, apparently because the flow through the IV 
   becomes restricted.  A pick-line was posited as a solution.  It is a more invasive tube that 
   plumbs to greater depths to find a larger vessel.  While the beeping is indeed annoying, Ken 
   opted against the procedure -- feeling he has enough stuck into him already.  I agree with him.
   
   The bed sore has improved enough that the VAC machine to remove the dead tissue was put on it.
   

 
   Ken said to me today, "Your square dance friends are too nice."  My sentiments exactly,
   but I know it's genuine.  He still loves the cookies.
   

 
   Rough, rough night!  Nurse team came in at 1:00 AM to give Ken his medication and sleeping pill. 
   More than an hour later they were finished.  What they did all that time, I don't know, but I was
   so tired by the time they left, that I fell asleep immediately that they left.  At 5:00 AM Ken 
   woke me up.  He had been in great pain since the nurses left and it continued to grow to unbearable.  
   He just kept thinking the medicine would kick in and he didn't want to bother me.  New nurse gave 
   the next round of medication and it wasn't long before the edge was off the pain.
   
   Nurses are continuously rotated, so that they don't stay with the same patient more than a day
   or so.  It's easy to understand the reasons for that policy, but it can lead to mistakes and
   misinterpretations.  For example, the wound doctor left verbal instructions for applying a
   special salve to a bed sore lightly.  "Just a tiny little dab." he said, "otherwise it will 
   gather lint and other foreign matter and be worse than useless."  The next shift nurse had it 
   slathered on like butter on Texas toast.  
   
   I think the nurse last night was victim to that problem and either neglected to administer 
   the pain medicine or did in the wrong dose.  
   

 
   Much better last night.  Probably because Kathy stayed with him, not me.  He was told there's
   a possibility of home on Friday.
   

 
   Still targeting Friday for homecoming,
   

 
   Added a week today.  
   

 
   Since Ken will not get out of the hospital now until next Friday, we brought his chair in so
   he could get a different scene.  Unfortunately, the doctor is resisting letting Ken out of 
   bed.  Ken is really stir crazy, so maybe he can wheadle his way into the chair tomorrow.  
   The good news is he is feeling good enough that he wants to get out of bed and his appetite
   has returned and he is eating a lot.
   

 
   Ken seems hale and hearty today.  Better than he has been for months.  The pain was less, 
   controlled by medication.  We were talking about the clinical trials that Geron Corporation 
   has initiated and I mentioned the animal testing with mice and how successful they had
   been.  His first reaction was to feel empathy for the mice and recalled a story about
   a mouse he had trapped at his store.  He'd had trouble with mice and could not locate 
   how they got in until the water heater needed repair.  The guy that came to fix it pulled
   it away from the wall and exposed an opening.  To stop them coming in, Ken placed some
   adhesive strip traps in strategic places.  For several weeks he'd find dead mice and remove
   them.  One evening while he was alone working on his bookkeeping, he investigated a 
   squeaking and found a live mouse stuck fast.  Although the easiest thing would be to leave 
   it to die, he wanted to be humane, so he got a broomstick and hit it.  Unfortunately,
   he missed the head the first time.  The neck blow made it quadriplegic -- something that
   filled him with sorrow.
   
   The memory was especially poignant to Ken now.  He went on to tell me how much he 
   misses his friends and coworkers.
   

 
   The sputum analysis returned positive for pseudomonas which may be a problem infection.
   It has not affected him much and we don't think it will delay homecoming on Friday.
   

 
   The insurance company wants him out again, but this time he would be happy to comply.
   So would we.
   

 
   Still here.  Maybe Friday?
   

 
   The insurance company relented and let Ken stay in the hospital.  The VAC machine has
   irritated the edges of his bed sore and it was removed.  What to do now?
   
   In more disappointing news, GRNOPC1 clinical trials have been placed on hold by the FDA.
   

 
   Homecoming moved back again.  Now they're saying the first or second.
   

 
   What to do about that bed sore?  The VAC apparently made it worse!
   

 
   The chain of new nurses continues.  The care seems to be more haphazard, with the 
   only seeming continuity the treatment with the salve Imentioned on August 16.  There
   are four paper cups (small ones) lined up at the lavatory, each with a quarter-size
   dab of that expensive ointment.  One nurse did it that way, and the others thought that
   was a good idea.  The nurse this evening was an hour late with his pain medication and
   followed that up by giving him his sleeping pill two hours early.  Not a happy camper. 
   

 
   The chair rules!  Ken was up today with a big smile on his face at the sunshine on his
   back for the first time in a month.  He handled it, seemingly easy, for three hours. 
   This evening, however, it was obvious he was paying the price.  The pain lion roared
   back in and it took a great deal of time and my patience to get his legs settled down
   again.
   
   He is game for another go tomorrow -- maybe not so long.
   

 
   I don't think the chair was the reason for the pain last night.  He did fine today and
   no pain tonight.
   

 
   Good news!  Although it looks big and ugly, the doc says Ken's bed sore is infection 
   free and should heal without resort to a skin graft or other heroics.  Up in the chair
   today with great spirits.  Now, if the Geron trials get moving again....
   

 
   Ken just keeps improving.  His grandmother (Kathy's mom) in Rhode Island is having her
   90th birthday party at the end of the month.  He surprised us with the announcement
   that he wants to go, something unthinkable only a few  weeks ago.  Home from the
   hospital tomorrow, we hope.
   

 
   Nausea has trapped him in the hospital until at least tomorrow.  It's sad to say how
   much better he feels and looks, but still can't go home.	`
   

 
   Home and physically in better shape.  Unfortunately, any transition sharpens the emotional
   turmoil in Ken -- and us.
   

 
   The emotions have rolled back a great deal, but Ken is still quite subdued.
   

 
   Ken was very much better today.  He spent most of it in the chair and I was gratified to
   see how much less pain and fewer spasms he is experiencing.
   

 
   Ken is up all the time now and he is much happier.  The pain is much better -- he says it's 
   still there, but perhaps he's just getting used to it.  I find that hard to believe.
   

 
   Living life again.  Ken has been with his kids yesterday and today.  His face is full of joy.
   

 
   Ken is gaining strength and coordination in his arms and although he has no ability or 
   strength in his fingers, he is discovering new techniques to manipulate things with his
   hands.
   

 
   Fine day today, except for the rain.
   

 
   In the chair and out for bumpy ride in the van to go to doctors -- no problem!  I'm sure
   he's still hurting, but he hides it well.
   

 
   Still good.
   

 
   We're very worried about the bad sore on Ken's back side, and conflicted about whether to
   get him out of bed or not.  Kathy thinks the chair may be irritating it and I'm not so
   certain.  It doesn't seem to me to be any worse (but not better, either.)  An appointment
   with the doctor tomorrow may weigh in.  Meantime, he's feeling good and wants to get
   up so that settled that -- at least until he sees the doc.
   

 
   Vindicated!  The doctor sided with me.  Ken does need to exercise the chair's tilt
   capability more frequently, but the sore is healing nicely. 
   

 
   Today good too!
   

 
   The week of the evil bedmongers!  Because the company we had been renting the hospital 
   bed from did not have the air mattress the doctor wanted Ken to have, we arranged 
   one from another company.  The replacement was not nearly the same quality and had to be 
   cranked up and down manually.  Today was the capper.  Someone delivered an air matress 
   that was too large for the new bed.  The rails could only be raised with great 
   difficulty.  But worse than that, the guy who installed it, lashed the mattress
   around the movable bar of head of the bed and the fixed frame.  Consequently,
   when the head was raised something had to give.  The lever that holds the head was
   irrepairably bent. 
   

 
   Bed is fixed and the bed merchants rose in my esteem. 
   

 
   Ken's health is improving, but it's all relative.  There are signs that he is stronger
   than any time since the accident, but the pain and spasms are clearly so bad that his 
   quality of life is suffering.  He's not home and his wife and children are sick (they all
   have H1N1 swine flu.)  Until the pain gets handled with an ablation and/or a baclofen
   pump, that will not improve much.  Our current goal is to get him back home pain free with
   controlled spasms.  Unfortunately, that seems to be a long way off.
   
   While Ken continues to improve, Kathy is constantly on duty and it's beginning to wear
   on her.  While Ken is supposed to be getting someone on a daily basis to care for him paid
   by a government program, they cannot find anyone in our area who is within their system, so 
   Kathy handles it alone while I'm at work.  
   

 
   Just when it seems to be getting better, the nausea returned with a vengeance.  The 
   medication does not always agree with his system today was a bad one.
   

 
   The nausea just doesn't want to go away, but Ken's spirits are soaring despite that.  Took
   him to the dentist yesterday (no dental work -- just testing to see what they will have to
   do to accomodate him for next week's appointment.)  He was great right up until half way
   home, when suddenly he was sick.  It wasn't much later until he was better again.
   
   Today when I came home, he was outside wandering around -- a first for him.
   

 
   Because his power chair is so big, we are renting a manual one for the Rhode Island trip.
   We took Ken to try one out today and he reported it is actually very comfortable.  Maybe
   for him, but I suspect I'm not going to like it much.
   

 
   Two days, no upchuck!  He seems to be nearly back to the point he was before his last 
   hospital stint, except for the pain, except for the lousy bed sore.  The sore seems to
   be healing, but its still got a long way to go.
   

 
   Feeling pretty good today.  Trish came to stay the night.
   

 
   Much the same.  Kathy's getting much more sleep.
   

 
   Boring day must mean Ken is at least as good as yesterday -- he is.  We got a health care
   worker for Ken yesterday -- finally!  Thankfully, she seems to be just the ticket.  Kathy
   should get more rest.
   

 
   The doctor visit today fortold ill tidings in two directions.  Ken still has the MRSA 
   infection and because he can't seem to shake it, a week stay in the hospital with intensive
   antibiotics is on tap.  Wait a minute!  Isn't that where he got that bug in the first place?
   Even worse, the bed sore seems to be "tunneling" and a skin graft is in order there.  Back 
   to the hospital again for that for three weeks.  Wait a minute!  Isn't that where he got 
   the sore?  Oh, well.  We've got to have faith in the professionals.  But this time we will
   verify.
   
   The good news.  The Rhode Island trip is still on and getting close.  Kathy leaves tomorrow,
   and hopefully, Trish, Paul and I can fill her able shoes until Friday.
   

 
   First day without Kathy.  We did OK (I hope) -- I keep worrying that I left something out.
   

 
   Kathy called to give me her checklist of things to bring on the plane.  I pretend to be a 
   little upset that she doesn't trust me to handle that on my own, but in this case, I'm 
   secretly grateful.  I'm worried about:  How're we gonna get Ken into the plane?  What if
   the altitude affects him?  Maybe they won't let us take the medicine on the plane.  And
   many other stray irrationalities.
   

 
   Going tomorrow.
   

 
   Ken did remarkably well on the flight.  No nausea until the Providence airport and that only
   passing.  He was comfortable and calm on the plane.  The only effect at all was the puzzling
   simultaneous freezing cold left arm and almost continuous sweating on his head and face.  
   I got a swath of napkins and soaked it up.
   

 
   Still sweating.  SCI patients often have these symptoms, because the loss of nerve com-
   munication disrupts the body's natural temperature control.
   

 
   Wonderful party for Ken's grandmother.  Ken ate hearty and enjoyed himself fiercely.
   

 
   Relaxing day.  Ken's still a little nausious.  Home tomorrow.
   

 
   On our way home and Ken little worse for wear -- probably better.  All-in-all Ken's trip
   was little short of miraculous.  The look on Kathy's mother's face, when he surprised her
   was worth everything.  Both of her grandsons being there was truly wonderful.
   
   Kathy's cousin, Mary Lyons, English Professor at Bryant University, told Kathy of a Rhode 
   Island congressman who had a similar injury to Ken.  At the airport today, while awaiting 
   boarding, we noticed a nice looking young man in a power chair also waiting to board.  
   He went aboard ahead of everyone and we were second.  Imagine our surprise when we discovered 
   in the course of conversation, he was the very person Mary mentioned: Congressman James 
   Langevin.  Ken and we had an interesting conversation with him.
   

 
   Ken is gaining weight!  We had thought he was looking fuller and was definitely eating more.
   Sure enough -- 143.
   

 
   We're going square dancing!  Ken felt well enough to spend the night at home.
   

 
   Ken is feeling good both days.
   

 
   Discovered something new and exciting!  Ken has some strength and control over his abdomen 
   muscles.  As I was lowering his head and shoulders to the bed tonight, I was surprised to
   discover I was lifting nothing.  He was holding himself up!  It was not long and, though
   he could not do another situp, there was definitely strength there.  It was a complete 
   surprise to Ken too.  What will come of it remains to be seen, but I am recharged with
   hope that it will lead to good things.  For one, it could dispel worry about bed sores 
   since not being able to shift position is a major cause.
   
   

 
   Bed sore seems to be getting smaller.
   

 
   Ken keeps cruising along.
   

 
   Went to square dancing again and dragged Ken along with us.  He really doesn't mind so
   much because Tomball Promenaders are so friendly.  He loves you all, but we have to admit 
   that hanging out with a bunch of "old fogies" (that's ya'all not me) would not have been 
   our most favorite thing when we were 36.  Your comments about how much better he looks put
   a smile in our hearts.  We knew he was gaining weight, but you know how things appear when
   change is gradual.
   

 
   I'm one day behind on this, hoping you wouldn't notice.  I had a little writer's block the 
   other day and haven't caught up.  This is not really catching up -- is it?
   

 
   Ken's been out of the house every day this week.  He and Trish went to see her father in
   the hospital today.
   

 
   Ken was able to dial his cell phone with his knuckles today.  That may not sound like much,
   but he has no control or strength in his fingers, so its like having wet dishrags attached
   to his wrists.
   

 
   More tragedy!  Tricia's father is on his death bed.  The machines are off, so it's just a
   matter of how soon.  It wasn't really sudden -- he's had two kidney transplants, and many
   other complications -- but ...
   

 
   Ken is getting quite proficient at using his computer, despite the finger handicap.  I created
   some tools to help him use the touch screen lapto with relative ease.
   

 
   Today was not a good day!
   
   The plastic surgeon said the bed sore is worse than the other doctors seemed to think.  It will
   require a one hour surgery and three to four weeks of follow-up.  Then four hours of surgery
   followed by six to eight weeks recovery in bed.
   
   It gets worse!
   
   Ken got a frantic call from Trish about 7:00 PM -- she had an accident with the kids in the
   car.  Trish has been on some new medication that caused an extreme reaction.  Thankfully, the
   kids weren't hurt, but the car is totalled.  Trish may or may not be hurt.  We'll have to wait
   for the medication to wear off to know.
   
   Not a good day!
   

 
   Been busy the last two days.  Kathy took the grandkids to our son, Dan's in Austin for a 
   birthday party.  She left me to do everything with Ken.  What a job!  I now have a crystal
   clear understanding of what the ol' gal has been going through.  What a saint!  I love Ken
   and I am happy to do everything I can for him, but still I can't wait to go back to work
   on Monday.
   
   Tricia's father died today.
   

 
   A person is in a bad accident and has a spinal cord injury and you think (as anyone would)
   "Oh my gosh!  What a terrible accident!  That person may never walk again."  But, until
   someone you love is that victim and you become the primary caregiver, you don't know the rest 
   of the story.  
   

 
   Another down day.  Ken suffered from a bout of autonomous dysreflexia and was in bed
   all day. By the time I got home his blood pressure was skyrocketing and when it reached
   206/136 we decided it was time for the emergency room again.  Here we sit again waiting for
   something to happen.  The medics gave him some medication that seems to be mitigating 
   his condition, but we'll just wait and see.  Hopefully, they'll get a handle on it and he
   can go home tonight.  If not, he'll have to miss his dental appointment tomorrow to get the 
   problematic wisdom tooth extracted.  The thing has been bothering him, and he'll be sorry to
   miss that.  
   

 
   Home again.  Ken has a bladder infection that triggered the incident yesterday.  He was given
   antibiotics overnight at the hospital and was sent home with new medication today. 
   

 
   The medication has done the trick -- at least for now.  He seems to be on a even keel and,
   better, his weight is now near 150.
   

 
   Still happy.
   

 
   Maybe happier. Geron Corporation announced today that their abortive
   clinical trials announced in January will begin again.  
   

 
   Out with the kids trick 'r treatin'.  Ken really enjoyed himself.  
   

 
   We're basicly in a holding pattern.  Ken is becoming more proficient with his arms and that's
   important.  However, still got a couple of hospital stays in front of him.  
   

 
   Ken and Kathy went with Trish to her father's funeral while I watch the kids.  Sad.
   

 
   Ken will go back to the hospital soon to get rid of the MRSA infection.  They say only about five
   days. 
   

 
   It still goes on.  Tricia's mother suffered a heart attack today.  Ken finally got that tooth 
   extracted.
   

 
   Small victories.  Inspired I think by Congressman Langevin (who, you may recall, we met on our
   return flight from Rhode Island) Ken has greatly improved his ability to manipulate objects with
   his hands and arms.  Although he has no function in his fingers, not only can he function 
   adequately on the computer, but with a device attached to his hand (he's become a lefty) he 
   can feed himself and he has total control of his cell phone with his knuckles. 
   

 
   Ken's mother-in-law is still in danger.  Ken went to visit her today.
   

 
   My hosting service thinks I'm a hacker and has blocked me from upating (or accessing) this site
   so it hasn't been updated.  Sorry.
   
   Life still goes on.  Ken is in the hospital tonight for his intensive antibiotic treatment to
   beat the infections.  Home again in three to seven days.
   

 
   I'm trusted again.  Ken experienced very low blood pressure and spent the day in bed -- sound asleep.  
   I'm thinking the antibiotics have knocked him for a loop.  The nurse emphatically told Kathy that 
   was not the case, but what else can it be? This article seems to support my view.
   

 
   Ken's still not up to par.  Although better than yesterday, he still did not want to get out of bed.
   He paid for sleeping all day yesterday with hours of insomnia and solitude last night.  Hopefully,
   that won't repeat.
   

 
   A little more awake, but still in bed.
   

 
   Ken's really tired of the hospital.  He wants to come home.
   

 
   Ken's feeling better today.  Promised he'd be out of bed tomorrow.
   

 
   He upheld his vow to get up.  Up and feeling good!  Home tomorrow. 
   

 
   Some changes were made to Ken's medication.  The result is increased leg spasms. 
   

 
   Not much to report.  In fact, nothing. 
   

 
   Ken had a brief bout with increased pain yesterday and we anticipated another round of the follies
   of May all over again.  Thankfully, it abated today enough that we took him with us square dancing. 
   

 
   Stronger than ever -- noticeably.  He's feeding himself (with appliances) and even lifting a glass
   to drink.  Weight is up to 152.  Now,  if we can just get the skin graft and past the long
   recovery in the hospital for that -- and maybe the baclofen pump. 
   

 
   Ken's kids were here for the weekend.  We all enjoyed them immensely.
   

 
   I'm off early for Thanksgiving.  It's a good thing today.  Kathy and Ken's caregiver, Sabrina were
   both down with a stomach ailment.  Kathy got past it quickly she thinks, so tomorrow should be back
   to normal.  I hate to think about Ken getting it.  
   

 
   Ken got it!  
   

 
   Ken was pretty miserable all night and today, but he is starting to come out of it.  To compound our
   problem, the caregiver that helps Kathy each morning has been sick also and has not come.  Knock wood
   -- I still have not got it.  Keep tuned.  
   

 
   Thanksgiving -- although the house was not nearly so full (tragedy has thinned the ranks) our boys 
   and their families livened the house up.  I have not got the bug -- so I've dodged a major bullet! 
   Ken was well again, but in a high level of pain.
   

 
   Another pretty good day.  Pain didn't seem so bad.
   

 
   Happy day!
   

 
   Back to school tomorrow.  After the rough start, Ken had pretty good Thanksgiving.
   

 
   Ken and I went to the movie 2012,giving Kathy a break from her duties.  It's refreshing that a made
   up disaster like that can take your mind off your own troubles.
   

 
   Ken stayed the night at home so Kathy and I went dancing.
   

 
   I went to the doctor Wednesday for a minor complaint and incidentally got the normal flu vaccine 
   AND the H1N1 vaccine and yesterday I got a nasty cold -- go figure.  Worse! Ken got it too and its 
   a much bigger deal for him because of the weakened chest muscles.  He had to be suctioned again
   for the first time in months.
   

 
   Been suctioned again a few time, but I think he is getting better.
   

 
   Ken's still a little under the weather, but he was able to go to daughter Alexis' Christmas
   pageant at school tonight.
   

 
   Ken's cold is sort of done (mine on the other hand is still semimiserable).  It's funny the things
   you think about -- Ken and I went to dinner at Chili's the other rainy night.  A gal samaritan
   came along in the nick of time with an umbrella for him (nobody even thought about the old guy
   with him who had been in the rain longer).  Feeling sorry for one's self once in a while is 
   OK, isn't it?
   

 
   The cold (Ken's) still lingers, but he feels better.
   

 
   Ken is so sore from the suctionings that he doesn't want any more, even though he needs them.
   But less today.
   

 
   It's over!  Ken is well again.  I'm not quite.
   

 
   Ken's family was here yesterday and today.
   

 
   The cold seems to be completely gone, but Ken is not looking forward to this week.  On Thursday he
   goes to the hospital again, this time Methodist, to complete the evaluation of the bed sore.  They 
   will keep him for up to a week administering antibiotics to prepare for the skin-flap surgery.
   After the surgery in a few weeks he will be confined to the hospital for a longer recovery period. 
   

 
   More like yesterday.
   

 
   Another downer!  Ken's checkup prior to the hospital found an abnormality on his EKG, so the hospital
   will be delayed indefinitely until his heart is evaluated.
   

 
   Empty nest again.  Ken is staying at his home tonight.
   

 
   Back again with the whole family.  The house is full!
   

 
   Another good day.  Kathy and I went to a church music program with friends, while Ken and his family
   went to a movie.
   

 
   Down Again!  Ken's sore has gotten deeper.  Got to get the "flap" and take care of it.  Unfortunately,
   even though the abnormality on his EKG turned out to be a false alarm, it delayed the surgery yet
   again.
   

 
   This is Kathy, giving Steve a break and taking time to wish everyone a wonderful Christmas and a 
   great 2010.
   
   It continues to amaze me that there are still so many of you who follow the blog regularly.  When I 
   run across friends, they comment on Ken's issues and happenings.  We are all humbled by your interest.
   
   Steve sometimes leaves out events or situations because they are too personal or he is just focused on 
   another aspect of Ken's saga.  For just about a month Ken and I have been battling insurance 
   bureaucracy and trying to get Social Security to send out the exact paperwork needed to make the 
   insurance mess go away.  Social Security takes forever and then sends the wrong information.  A 
   representative involved in the insurance end told me today that it was way too late.  He was sick that 
   Ken and Trish would be without insurance for a year, but the law is the law.  Then I called my guardian 
   angel, Lynn at Papa John's, and between us I may have a handle on all of this.  She worked the 
   phones with insurance, and I managed to get the right person at Social Security to FAX what we need.
   Today was one of those days you wish you could erase.  
   
   I'm going to bed now with a glass of whine. ;-)
   

 
   Ken's pain (and the accompanying spasms) has diminished to a point where, today he felt like we could
   do his leg exercises.  No problem!  This is a milestone, because it's been months since we have done
   them.
   

 
   Christmas Eve. Ken is home with his family -- as he should be.  Merry Christmas!
   

 
   Merry Christmas from Ken and his family.  Merry Christmas!
   
   

 
   We had a wonderful, lazy day!  Just seems to keep getting stronger.
   

 
   Another slight setback.  The pain came back a little today, enough that Ken didn't want to do all the 
   exercises.
   

 
   Still the pain.
   

 
   Still the pain.  I believe it's a little worse today.
   

 
   Still the pain.  However, we have a better understanding of the cause, so maybe not much longer.
   

 
   Still the pain.  Not nearly as bad as on May 21 and 22 and Ken says its 
   better than being sick by far.
   

 
   Groundhog Day!  I forgot to change the date for the last few days.  Sorry.  The pain is worse
   today.  Perhaps another urinary tract infection?  We'll callthe doc tomorrow.
   

 
   Called, but machine and no callback.  Ken says the pain is much less, so maybe it's resolving 
   itself.  But here we go up and down again.
   

 
   A little down today.  Maybe Monday will bring an answer from the doc.  Got an appointment tomorrow
   to see about his heart.
   

 
   The heart check produced a puzzling report.  No electric pulse to the upper chambers (atria).  
   This link to electric  heart seems to say that the electricity starts in the atria and 
   is then passed to the ventricles.  The doc doesn't seem too worried, but he put a portable 
   heart monitor on Ken for two days.  In light of the fact that Ken's heart stopped briefly
   twice in the early stages of his injury, this is an issue for concern (maybe they were the root
   of the problem).
  
   

 
   Kathy's birthday.  A good report on Ken's nuclear stress test (the followup to the heart issue) 
   tomorrow will be a great gift.  Ironically, I had that same test today as part of my annual physical.
   However, mine included a sress test that Ken will not be able to do.
  
   

 
   Well, another "Tempest in a teapot."  Ken's test showed his heart to be normal.  Yes!
   

 
   Ken feels much better today and it seems good news is beginning to roll in.  The insurance snafu
   has been resolved and they're telling us it's retroactive.  He's spending tonight and tomorrow with
   his family.
   

 
   Monday, Ken will go into the hospital for his debriding procedure preparatory to having a skin
   graft over his bed sore.  He'll be in the hospital only a night or two, but after the skin he'll stay
   for several weeks.  Bed sores are not fun!
   

 
   Ken's not feeling well today.  Just blah, not pain.
   

 
   OK day.  Anticipating the debriding tomorrow.
   

 
   The debriding was successful and we anticipate Ken will be home tomorrow.
   

 
   He is home, and in decidedly better spirits.
   

 
   This is Kathy.  I thought you would like to know what a typical 24 hours for Ken entails.  He takes 
   medication from 13 prescriptions and a couple of over-the-counter products in that 24 hours.  Medication 
   is given every 4 hours round the clock.  When in bed, usually from 11:00 PM to about 12:00 noon, he is 
   turned every four hours.  He receives a nebulizer treatment three times a day to break up any congestion 
   lurking in his tubes.  Morning and evening for the next several weeks, in preparation for his bed sore 
   operation, I will be putting two IV antibiotics in his pick line.  One takes one hour and the other two 
   hours to infuse.  Because of the procedure on Monday, we now have to do wound care twice rather than 
   once a day.   That takes about 20 minutes each time.  He gets a bed bath and shampoo every day.  I have 
   been without help for over a week, except for a nurse who comes twice a week for about an hour to monitor 
   Ken and do wound care.  Whichever of the two nurses comes, she always spends the rest of the hour helping 
   with other medical tasks, bathing, etc. to help me out.  We like our nurses!  Tomorrow a new home care 
   helper will begin coming.  She has no health care experience but is willing to learn, so add training 
   to the schedule for Ken and me.  
 
   Steve has devised several gizmos to help Ken use his computer, his phone and the TV remote.  So once 
   we get past all the morning care, including getting Ken into his wheelchair and lunch, Ken is busy with 
   all kinds of tasks on his own.  He spends quite a bit of time on his computer, browsing the web, 
   e-mailing, and researching.  Because Steve was able to round up our rattletrap handicapped van (Ken 
   calls it "Bird Turd"), Ken and I are able to keep appointments and run errands in the afternoon.  
   Today he got a haircut.

   It's now evening, the IV medication is flowing into Ken's arm, and he and Steve are watching the Rockets.  
   Soon it will be bedtime, with wound care before lights out.  We'll start all over again at 1:00 AM with 
   nebulizer, pills and turning.
   

 
   The new helper seems to be good so far.
   

 
   Skipped a couple of days.  Just not much to say.  No news is good news.
   

 
   Continuing antibiotics preparatory to the "flap" surgery sometime in February -- hopefully early February.
   Expect to get the results of the culture on Tuesday or Wednesday.
   

 
   Ken's five year old son, Brendan gave us a little scare today.  He has health problems in general, and he
   got sick so quickly today that Trish rushed him to the emergency room.  The pulse settled down when it 
   was determined he only has mononucleosis.  
   

 
   Good day.  
   

 
   Ken is now ready for the "flap" surgery in a week or two, but Kathy says she needs to make arrangements 
   for him to recuperate in a nursing home for a while.  Apparently, Ken will qualify more easily for additional
   government benefits with such a stay. 
   

 
   Trish and the kids are here for the night.  Ken and Trish will go to the Rockets game tomorrow.
   

 
   Took a close look at Ken today and realized the progress he's made.  Just in confidence!  He no longer wants
   the chest strap that was almost like a security blanket.  He is compensating for his inability to move his
   fingers.  He can quite successfully manipulate small objects, including his cell phone.  Other than having
   to stay in his power chair, he is beginning to look quite normal. 
   

 
   Still waiting for the surgery.
   

 
   Ken will go to Methodist Hospital for the flap surgery on Tuesday.  He's taking the "grand tour" of Houston
   area hospitals.  After the surgery he will recuperate at Methodist for about a week and transfer to a long
   term recuperation hospital -- like Triumph -- for another five weeks or so.
   

 
   Ken went to his pre op consultation at Methodist Hospital and it looks like everything is a go.
   

 
   Kathy and I went dancing tonight while Ken stayed at his house.
   

 
   Waiting for the surgery.
   

 
   Christy, Ken's helper was sick today and Kathy was left to do Ken's care on her own.  It has become 
   much more involved because of the surgery prep and she was justifiably proud of her accomplishment.  
   Tomorrow is surgery day so they will be up and out early, so hopefully Christy will be well enough to
   help.  Ken is torn between the emotions of it finally being here and dread of the six or so weeks of
   in hospital recovery.
   

 
   Surgery was a success -- a great deal of muscle as well as skin was moved into the sore area to
   provide padding.  Ken's awake but drugged.  Five to eight days here, before he transfers to a recovery
   hospital.
   

 
   Ken has really been tired since the surgery.  He sleeps around the clock.
   

 
   Much better today.  The doctors say the patch is healing nicely so far and he will be moving to a
   recovery hospital (probably Triumph in Tomball) on Monday.
   

 
   Still good.
   

 
   Ken and I watched the Super bowl together.  He was happy the Saints won.  Tomorrow, going to 
   Triumph I guess.
   

 
   Ken has settled in at Triumph room 226.
   

 
   A new bed.  And what a bed!  It looks like an oversized lion claw bathtub immersing Ken up to 
   his neck.   Clinitron mattress.  Unfortunately, it doesn't look like the 
   picture.  Some places refer to it as the "old" style and he can only lay flat out on his back.  It may 
   help to heal his wound, but what a position to constantly be in.  Here's a picture of one like his.
   

 
   Maybe a new bed this evening, one that will let him sit up and read and work the computer.  
   Flat on his back, he doesn't have enough strength in his arms to reach up to the keyboard.  
   That could be real old, really fast.
   

 
   Ken got his new bed and though, being in the hospital is not the most fun for him, he is much 
   happier.  Kathy and I spent yesterday and last night at Dan and Bobbie's in Cedar Park so
   we were out of touch.
   

 
   Here we go again!  Ken was told the surgery is not healing the way it should, and they may have
   to repair it.  What that will involve it is up in the air.
   

 
   Nothing more was said about the problem today.
   

 
   It's official.  The procedure was a failure and they have to reopen to fix it.  Ken will go back
   to Methodist Hospital next week.  Recovery could be quite extended.
   

 
   News today is not quite so bad.  The visit to Methodist will be for evaluation and there is a
   possibility, though not likely, that it will be determined, nothing will need to be done.  It is
   likely, however, that the stay at Methodist will be only a day or two, but the recovery in any 
   case will be extended some.
   

 
   Ken goes to his appointment at Methodist tomorrow at 11:00 AM.  His doctor is not sure if he 
   will be admitted there or just for consultation and right back to Triumph.  We're hoping for 
   the latter, of course.
   

 
   Back at Triumph.  Good, but many questions.  The surgeon does not like the Clinitron bed because
   it requires Ken to lie flat on his back (right on top of the sore.)  The strident question:
   "Who ordered the bed  then?"  He may go back to Methodist to stay next week to be "closer" to 
   the doctor, or he may come home (our house) where Kathy can keep him off the sore.  Second 
   obvious question: "Why didn't we do that before?"  Third and most important question: "There is 
   dead skin around the patch that needs to be debrided again.  What will that involve in terms of 
   time and recovery?"
   

 
   Kathy went to Rhode Island to visit her mother for a week, so it's just Ken and me.  It turns
   out he will go to Methodist for debriding on Monday and Tuesday.
   

 
   I have been writing these, but my hosting service failed me for the last few days, so I couldn't 
   upload it.  Sorry.  I visited Ken for about three hours after my track meets today, but he slept
   through most of it.  I guess I'm boring or there is a certain comfort about my being there.  One
   of the doctors seems to think he'll be coming back to Triumph right after his appointment Monday,
   but we have the impression he'll be staying at Methodist.
   

 
   I'm out of school tomorrow to accompany Ken to Methodist Hospital.  Doesn't seem to be any problems.
   

 
   Ken's "appointment" was for 10:00 AM.  The ambulance arrived to take him at 11:00 and when we 
   got to Methodist two hours late, nobody seemed too concerned.  A couple of doctors came in to see 
   him between 2:00 and 3:00, but Dr. Dinh, his primary physician didn't show until after 5:00.  
   I get the distinct impression that appointment times are set just to ensure a patient gets to
   the destination before quitting time.  Nobody could tell us the time of the surgery tomorrow 
   despite my nagging to "call someone!"  Finally I got Dr. Dinh's number and called myself.  The
   lady in the office said 8:30, but when the doctor visited it became 9:30.  Seems like a loose ship,
   not well designed to inspire confidence in a patient, nor an elderly father.
   

 
   Got a call at 7:45 that the surgery will be at 8:30 after all (it's an hour drive to the hospital.)
   Trish was in another waiting room, so I didn't see her and the doctor came to me at about 10:30.
   Everything went fine in the surgery (debriding).  The next round to close the flap again will be 
   Friday or Monday.  I went to Ken's room and used Ken's phone to call Kathy.  While I was dialing 
   the phone rang.  It was Trish--nobody had told her he was out of surgery.
   

 
   Picked up Kathy at the airport (Yayy!) and we stopped in to see Ken on the way home.  The flap
   surgery will be on Friday, so by next week he'll be moving again-- hopefully home.
   

 
   Although the surgery took a great deal longer than the doctor expected, he was generally pleased 
   with the outcome.  There is a possibility that Ken will come home on Monday or Tuesday.  The surgeon
   was not pleased with the care at Triumph, part of which was the clinitron bed.  The reason he did
   not come home before was the doctor's feeling that the level of care would be more than Kathy and
   I could handle.  He didn't know Kathy. 
   

 
   Ken's much more comfortable today and looking forward to coming home. 
   

 
   Ken's ready to come home and the day is tomorrow.
   

 
   He's home and happy.  I just realized that means up at 5:00 AM for me.  Better than a hundred mile
   round trip to the hospital!
   

 
   Settled in fine.  Won't be out of bed for six weeks and it's difficult to operate the computer and
   TV remotes, but the devices I've jury rigged almost suffice.
   

 
   Still doing fine.
   

 
   Kathy thinks the bed sore is healing nicely.  If that continues, we should be back where we should 
   have been months ago.  More on that later.
   

 
   Ken had an upset stomach last night, but Kathy thinks it's just nerves.  He was much better today.
   He and Alexis enjoyed the game.
   

 
   Things are routinizing (probably not a word, but I hope you know what I mean) and I haven't been
   faithful to this -- sorry.  It's probably good news.  He was able to shave himself with a safety
   razor strapped to his hand yesterday.  Little victories!
   

 
   Still in bed -- and will be for another four plus weeks.  The five weeks I predicted on January 26
   have come and gone.  Recovery in the hospital is not what it is cracked up to be.  I believe I am 
   more stir crazy than he is.  This is getting old!  It is for Ken too.  
   

 
   Slept a lot today.  Can't blame him.  With only the same four walls and a window, it's boring. 
   

 
   Still a drag for Ken.  For me, though, Spring Break is over and I'm out of the house all day.  He
   was in pretty good spirits when I came home.  The good news: he is getting far better care than
   he would in any hospital.
   

 
   Had a little nausea during his dinner and didn't eat much.  The bout didn't last long and he seemed
   to be in great form today.
   

 
   The nausea at mealtime persists, but other than that ok.
   

 
   I had a busy end of week -- track meets on Thursday, Friday and Saturday with the district Computer
   Science competition as well -- all of my kids did well.  But I let this journal slide -- sorry.
   Really nothing new to report, however.  We are anticipating his evaluation on Wednesday.  Hope
   for a positive report.
   

 
   Appointment for evaluation tomorrow.  Hoping for good news.
   

 
   Good news and bad. (but not too bad)  The surgery is healing nicely.  Three more weeks in bed as we 
   expected, but afterward he will need to go to TIRR for some rehab (sitting training) before getting
   into his chair again.  It has more to do with avoiding stress on the surgery that learning to sit up,
   but that will be an additional few weeks in bed.  On a good note, he needed to get a prescription 
   and "fitting" for a new power chair at TIRR anyway, that can be handled at the same time.  In addition 
   he can get a prescription for adaptations on a new van, perhaps one Ken can drive.
   

 
   Ken has experienced more congestion than usual for the past two days, requiring use of the suction
   machine.  Hoping it's not a signal of something more serious.
   

 
   Sad day for us all.  Ken's kids have chicken pox and couldn't come for Easter.  
   

 
   Chicken pox over.  The kids came today. 
   

 
   Paperwork regarding insurance reimbursement is driving Kathy crazy. She thinks it's finished.  Now I
   should get her busy on the taxes.  
   

 
   This is me, Kathy.  Steve turned the blog over to me tonight because I accompanied Ken in the ambulance
   to the rehab hospital (TIRR) for a visit with the doctor who will set plan we all like in motion.  
   He hadn't seen Ken since spring, when Ken was so sick and so thin.  The first words out of the doctor's 
   mouth were, "Wow, you look like a whole different person!  You look great."  Pending insurance approval, 
   the plan is for Ken to enter the rehab hospital in two to three weeks for the sitting program.  This 
   involves gradually longer periods sitting, depending on how his wound reacts.  After a month or so, if 
   all goes well, he will be able to sit in his wheelchair for long periods of time.  At the same time, 
   they will take measurements and pressure map him for a new wheelchair cushion, and hopefully he have a 
   lovely new power chair three months after it is ordered.  After Ken is released from the sitting program, 
   he will likely have a baclofen pump inserted to help contol his leg spasms and reduce pain levels.  Then 
   he goes back to the rehab hospital for some serious rehab.  Since his trach and PEG tubes won't be needed, 
   Ken will have those removed at some point.  The PEG tube has been a wonderful tool for improving Ken's 
   nutrition, He still gets two cans of a high nutrition medical formula to supplement what he eats.  These 
   feedings have made all the difference in his recovery. Last spring this was all that kept him going when 
   he was too weak to eat. Happy weekend to all.
 

 
   Happy day!  Finished the taxes!   
   

 
   Had to go to MD Anderson Hospital to get Ken's special medicine -- added 80 miles to my normal drive home.   
   

 
   Tax day.   
   

 
   Still no definitive word on when Ken will go to TIRR.  Things are about the same.  Neither good, nor bad.   
   

 
   Well --  We got some news about TIRR today.  One word -- insurance!  Kathy's dogged persistence finally
   got some information.  The insurance company has denied coverage for a TIRR rehab session!  It's almost
   automatic.  No matter how plain it is to see the need, the insurance company will deny the first time.  
   There are some possible alternatives (DARS for example), but there is only one thing certain about this
   culture of denial -- recovery time fritters away! 
   

 
   Going for it tomorrow!  Ken is tired of waiting for the doctors and TIRR.  After I get home, we are 
   getting him out of bed and into his chair for a few minutes.
   

 
   Ken was out of bed and in his chair for a little while yesterday and today again.  He pushed the 
   20 minute envelope to nearly an hour each day.  He's sort of like a kid not wanting to go to bed.
   There don't seem to be any ill effects.  Did I mention he's really tired of being in bed?
   

 
   Somehow Ken seems stronger when he's out of bed in his chair.
   

 
   Out of bed every day.  Kathy is a little worried about spots of blood on the bandage when we get 
   back in bed.  Hope we're not premature.
   

 
   I've been feeling down all day.  I'm away in Waco for the regional track meet.  I just realized why.
   Tomorrow is the second anniversary of the accident.
   

 
   Two years!  Word that Ken will go to TIRR Thursday.
   

 
   Ken will go to TIRR Thursday for sure.  I'm staying to take him because Kathy needs to get her 
   tooth ache fixed.  Root canal -- yuck!
   

 
   Ken in TIRR.  We'll get more sleep, but we miss him already.  Kathy's tooth pain is gone.
   

 
   The contrast between Ken at TIRR now and last time is so great as to emphasize just how
   much improvement he has made.  He is much more self-sufficient.  I took off the wire lever 
   he absolutely needed before, and though he still cannot move his fingers, with the strong
   wrist and arm movements, he can handle the buttons very well now.  The wire and buttons 
   pertained to his power chair.
   

 
   New chair yesterday -- fitted to him.
   
   We were told from the beginning that any recovery would come in ups and downs, but I was totally
   unprepared yesterday.  Kathy got a look at a seemingly very infected wound and we immediately
   thought the worst.  All her successful effort fighting the infection looked to be totally undone
   by a few days in a highly respected hospital -- again!  What happened?  Was it torn open?  Did they
   give him a bath and leave a wet bandage on it?
   
   Today, however, prepared for the worst, I got a look.  It didn't look too bad, so maybe it was a
   false alarm.  Hope so!
   
   
   

 
   Kathy thought my concern for the infection was a bit overblown.  Perhaps, but it certainly revealed
   my emotions.  Approval for a two week's stay is in hand and a request to the insurance company for
   a full month is pending.
   

 
   Ken is really upbeat today after getting information about the possibility of being able to drive
   a specially modified van.  DARS will pay for the modifications if he has a job or goes to school. 
   He also believes he is able to move his right thumb slightly.
   

 
   Still high!  His thumb is definitely moving, but when I asked him if he could stop it, he couldn't.
   Maybe it's just spasms, but it's hopeful, I think.  One thing is a big relief, the pain was completely
   gone while he was up in his chair.  That hasn't happened for months.
   

 
   Got away from the hospital for nice dinner.  Everything is swimming along.
   

 
   The doc took out Ken's PEG tube today, so he is less Borglike.  Expects to come home on Saturday.
   

 
   Got fitted for a new chair today.  It is a marvel with all kinds of technological gadgets.  It'll
   take about three months to be ready.
   

 
   Aced the trial for the baclofen pump.  No pain and raced around the hospital over bumps and had
   no spasms.  Home again tomorrow.
   

 
   Ken' home today and his family joined us this evening.
   

 
   We went to the viewing of a square dancing friend who died suddenly.  Ken was feeling well enough to
   go too.  The trach hole is getting smaller.
   

 
   A little setback today.  Tired and not feeling well.  We put him to bed early.
   

 
   Bed early again today.  Still feeling punk.
   

 
   Much better today!
   

 
   Ken has been going strong!
   

 
   Ken told me today he has a goal to be driving and working again as a manager trainer within six 
   months.  It may take longer than that, but I believe it will happen.
   

 
   This is Kathy.  I volunteered to write the blog tonight so I could vent my frustration.  Since last
   Friday I have been trying to get refills on several of Ken's numerous medications.  Actual pahramacy 
   comments:  It was supposed to be written for three months?  Sorry, it's only written for one month.  
   No it doesn't come in this strength so we can't fill this prescription.  This is a controlled substance, 
   and it needs to be written differently.  Now it's written correctly, but we don't have the medication in 
   stock and won't have it until next week. Besides, the doctor crossed something out here, and we aren't 
   allowed to fill ones with changes.  Maybe another pharmacy will oblige. 
   Maybe in a few days I'll get around to laughing about it all. Kathy
   

 
   We all went to Cedar Park to visit with our son Dan and his family.  Ken handled the trip well.
   

 
   Ken's birthday.  37.
   

 
   The evaluation for the baclofen pump was successful today.  Monday is the day.
   

 
   Pump will be installed tomorrow.  Supposed to be routine, but it is surgery and feeds into the spinal
   fluid.  The 13th is today and tomorrow is NOT Tuesday, so the signs are good.
   

 
   Pump installed.  No complications.  Ken was understandably thrown for a loop, but we expect he'll
   be back on an even keel soon.
   

 
   Pain and spasms are worse.  Hopefully it's just an adjustment period.
   

 
   We keep hoping the pump is the answer, but so far it's been a bust.  A bright spot is the spasms
   seem to be under control, but the pain!  The pump was supposed to quell that but we have upped
   the oral medication several times to no avail.  The pain has been so bad that he is having difficulty
   sleeping.  Tuesday he goes in for an adjustment, so there is hope.  He stayed in bed most of 
   Friday and all day Saturday to combat an overall blah feeling, probably caused by the pain and 
   lack of sleep.
   

 
   Ken has been going through a rough time for the past two days.  The medication in the pump has been
   adjusted and that seems to be getting about right, but he has had increasing amounts of thin congestion
   in his lungs that he cannot cough up.  Yesterday and today, Kathy has had to use the suction machine
   to clear it.  Even that has not cleared it up.
   

 
   Congestion is less today -- happy day!  My long-term concern is -- what if this recurs (probably 
   likely since he has less muscle control of his chest -- hard to cough it up).  The plastic
   surgeon is going to stitch his trach hole that never did close on its own.  That was actually a good 
   thing yesterday when Kathy was able to thread the tube for the suction machine through it.  What happens
   after it's closed? 
   

 
   Tough day today.  Congestion again!  Used the suction machine twice and still not clear.  Ken is thinking
   hard about whether he wants the trach hole closed.  
   

 
   Haven't written in a few days.  Nothing has changed -- well, maybe a little.  Kathy reminded me she hasn't
   had to a suction for three days.  At MD Anderson Tuesday, the doctor seemed to think the medicine in the
   baclofen pump is the cause of the congestion.  Going to Memorial Hermann tomorrow for more consultation,
   this time with his primary physician.  Maybe there'll be good news tomorrow.
   

 
   Went to the lung doctor today.  Ken felt particularly congested, but decided not to have Kathy use the
   suction machine.  Rather he wanted the doctor to see the extent.  Scope was snaked down his throat 
   revealing exactly what he wanted to show.  While the right lung looked completely clear, the left one 
   (that's the surgery side) looked like an overflowing beer mug.  The doctor prescribed an antibiotic 
   and chest xray while tossing arouund words like "pneumonia".  Ken will see his primary care physician
   on Tuesday. 
   

 
   The congestion is a lot better today!
   

 
   Bad again today.  Tomorrow, to the doctor.
   

 
   Better again.  But not gone entirely.
   

 
   I went to Austin for a computer science inservice at the University of Texas Wednesday through Saturday
   leaving Kathy alone with Ken.  He has been pretty good with the congestion, so maybe the pneumonia
   scare is over.
   

 
   I just looked down for a moment and a week went by!  I guess that's good news because nothing new has 
   happened.  He's still in great shape and better we keep discovering new abilities.  Today, for example,
   he managed to change memory cards on his video game by himself.
   

 
   Ken has settled into a period of relative good health and of improvement of his motor skills.  It's not
   much in relationship to "normal", but small things with his hands and arms.  For instance, with the aid 
   of a reaching tool I made out of PVC pipe he can unlock and open doors to let himself out.  That with 
   his ability to use his cell phone makes us feel ok about leaving him home alone.  Last night he was 
   able to take off a wrist brace when it became uncomfortable.  With the help of some simple devices, he 
   is able to feed himself, brush his teeth, shave and use his computer pretty close to normally.  We are 
   still anticipating that he will soon be relearning to drive.
   

 
   Comfortable enough to fall asleep in front of the TV then claim he wasn't asleep -- No wait, that must 
   be me. 
   

 
   I went to Sacramento and on to Rexburg, Idaho to visit with my mother and haven't updated the blog in 
   a while.  Kathy has been holding the fort and working her tail off.  Ken seems to be better.  He's been 
   using a CPAP machine at night to deal with sleep apnia with varying degrees of success.  The difficulty 
   has been with the still open trach incision that leaks and consequently defeats the purpose of the
   machine.
   

 
   Trip to Cedar Park for the weekend to celebrate a grandson's sixth birthday.  Ken handled it pretty
   well, but is really tired today.  Me too!
   

 
   Been three weeks since the congestion and Ken is feeling strong.  He's talking like he wants to get 
   the trach hole sewn.  Hope it's not premature.
   

 
   Got a portable hot tub thinking Ken would like it.  I like it, but he's a little afraid to try it.
   I'd probably be scared too, worrying about keeping my head above water.  He's promised tomorrow.
   

 
   Tough Day for Ken.  I went to a track meet in Austin and learned on my return that he felt so bad 
   that he did not get out of bed.  He had the symptoms of autonomic dysreflexia caused by an ostruction
   of his urinary catheter.  Nurse Kathy performed her magic and by this evening he was feeling better.
   

 
   The week has been good.  So good that nothing is remarkable.  With the help of a few of my "inventions"
   Ken is is becoming quite self-sufficient. 
   

 
   Milestone!  Ken took the plunge and sat with Kathy and I in the hot tub.  Everything went fine except
   for the cramp in my leg when I was getting him out.   
   

 
   A little subdued today -- hopefully not reflective of the hot tub adventure.  Maybe it's just the rain?    
   

 
   Ken and Kathy made arrangements for a helper to come two days a week.  Kathy's thrilled,  Me too.
   

 
   Ken's spasms and the pain had become noticeably worse, so the adjustment of the pump today came at
   a good time.
   

 
   Spasms and pain continue to be worse after the adjustment.  Hopefully, thats just temporary. 
   

 
   Spasms and pain are still bad.  They seem worse yet.  I'm worrying again. 
   

 
   Much better today!
   

 
   My brother Nick and his wife Pam visited with us from North Carolina over the weekend.  While
   Kathy and I had a great time, Ken was kind of subdued.  Saturday night his blood pressure went
   a little wild and we began thinking about a recurrance of the autonomic dysreflexia but today
   today, though still really quiet the BP stabilized.
   

 
   Said today he felt better than he has for three weeks.
   

 
   No news is good news!  Ken has felt really well and there is a new helper that both Ken and
   Kathy like pretty well.  Wednesday is the scheduled surgery for Ken's trach hole, so he'll
   be better able to talk without having to hold his hand to his throat soon.
   

 
   Up at 2:00 AM to get Ken to Memorial Hermann Hospital by 5:30 for his surgery.  I got to go 
   back to sleep for a little while before going to work, but for Kathy it was a lack-of-sleepathon.
   In bed early tonight.  The surgery went well.  It's obvious his talking is much easier already
   with much more volume.
   

 
   The end of the week has been uneventful.  The surgery is clearly successful.  Ken is talking so
   much more clearly.  The coming week is full.  Kathy will get him to some kind of event every
   day.
   

 
   Long day for Kathy and Ken.  The trip to the medical center and back is always long.
   

 
   I took a long look at Ken today and it hit me that, except for the fact that he can't walk,
   he appears to be mostly back to normal.  Although he has no control over his fingers, he
   makes up for that by new skills he has learned with his arms and hands.  At a glance, it 
   doesn't look to be a handicap. 
   

 
   Big day for Ken.  Surgery to fuse his right wrist so he can gain functionality.  He was doing
   okay with the brace I made him, but it was some uncomfortable.  A lot of pain now and it's
   bleeding some, but hopefully he'll come out better.  He has to wear a cast for six weeks.
   

 
   Ken had a lot of pain in his handthis week, but it seems to be healing.  He said it wasn't 
   much today. 
   

 
   The pain is mostly gone and -- wonder of wonders -- Ken finally got his new power chair.
   It is a Quantum 300 with many bells and whistles and he is liking it a lot. 
   

 
   No more pain!  We are all in Cedar Park for Dan's birthday.  Ken is back to normal as can he
   can be.  Still has the cast for another four weeks.
   

 
   Been a long time.  Sorry.  Nothing new and that's good.  Ken goes to some doctor or dentist
   nearly every day keeping Kathy hopping.  The surgery on his hand seems to have completely
   healed giving him more dexterity with his right hand.
   

 
   A lot of pain today, but it was by design.  Yesterday, his doctor at MD Anderson adjusted
   the medication produced by Ken's  baclofen pump and to see how the medication was balanced
   he cut back on the pain killers he was taking orally.  It's pretty obvious the adjustment
   needs to be tweaked again.
   

 
   Despite some pain and spacticity, Ken's really been feeling good over the week.  He and 
   Kathy make the trip to MD Anderson again tomorrow for adjustment.
   

 
   Difficult pain today.  They just can't seem to get the balance.
   

 
   Another trek to MD Anderson for adjustment.
   

 
   Kind of a boring battle.  Still not getting the medication settled, and topping that Ken
   developed a fungal infection.  Not a real disaster, but annoying.
   

 
   Still fighting the skin fungus, but it seems to be getting a little better.  Visit to the
   doctor today sort of confirmed that.
   

 
   I an amazed at Ken's progress.  Not having any control over his fingers, he has developed
   his dexterity with his arms that he can manipulate small objects quite well.
   

Shaving by himself

Using the Computer

 
   The pictures clearly shows his progress. 
   

 
   Great Thanksgiving!  Ken's head is up and continuing to look forward to driving.
   

 
   It seemed to come crashing down again yesterday whe we were dealt a harsh reminder
   of what SCI can do. Autonomic dysreflexia   reared its ugly head and Ken has had bouts
   and gave Ken several terrible headaches and sweating.  Kathy coolly and calmly handled it,
   and tomorrow they will go to the doctor to address it.
   

   
   This is Kathy.  The other day I was reading an article in O Magazine by a mom of 
   a quadriplegic son.   She has written a book about the experiences and the challenges 
   for both of them.  The parallels are striking.  She got a call from a hospital asking 
   if she was ___'s mom.  That's how the hospital found me after Ken was taken to the 
   hospital by life-flight.  They looked in Ken's phone under "Mom."  You don't want a 
   call like that-trust me.  Her description of seeing her son with the halo they placed 
   on his head to stabilize his head and neck brought back memories of our first look at 
   Ken in the emergency room wearing his halo.  Her descriptions of the difficulties 
   involving the ventilator and his bouts with agonizing pain were right on.  She talked 
   about her son's first words after the accident.  I remember the doctor deflating the 
   cuff on his trach so Ken could describe the location and type of severe pain he was 
   obviously experiencing.  But the first words out of Ken's mouth were thanks to Steve 
   and me for being there with him day after day. Not everything in our experiences is 
   parallel, however.  To help her son, they have a capuchin monkey who is being trained to 
   perform small tasks.  Not gonna happen!

   Ken is in the best shape since the accident over two and a half years ago.  His appetite 
   and weight are fine, he has an awesome new power chair, his trach incision has healed 
   nicely, and the baclofen/pain pump is working-although not perfectly pain wise--- but 
   spasms and pain have decreased.  An operation to straighten his right wrist has resulted 
   in a more usable hand.  He eats everything we eat by using a holder for his fork or spoon 
   or picking up things like sandwiches.  Thanks to Steve's inventive gizmos and Ken's 
   resourcefulness and tenacity, Ken shaves himself, brushes his teeth, and uses his 
   computer with great skill, as the blog pictures have shown.  He even signs his name 
   in quite readable print by grasping the pen in a way that works for him.  We have a 
   helper maybe three mornings a week-although we never know who will show up or even 
   if one will.  The lingering and pesky fungal infection finally healed, but Ken is 
   dealing with a different infection and is now on IV antibiotics at home.  I'm becoming 
   quite the little nurse.  And so we have much to ponder during this season of stock 
   taking.    

   Merry Christmas to all of you from all of us. 

 
   Everything is routine, and that is great, but I have not found anything to put in the 
   blog.  Still haven't, but I don't want anyone to think I'm quitting.  The cliche about
   "No news" sums it up. 
   

 
   Despite the fact that he still cannot move his fingers, Ken is on the verge of being 
   able to use his hands normally.  Other than being unable to grasp, he is really quite 
   dextrous.  I'm working on something that may allow even that.
   

 
   Ken met with his former boss at Papa John's today, and is very upbeat about the 
   possibility of returning to work -- at least part time -- sometime in the early
   Spring.
   

 
   MILESTONE!  Actually a couple.  Ken is going with me and Kathy to Reno to watch me 
   pole vault and he decided it would be much more convenient for everyone to not take
   his heavy motorized wheelchair.  He tried a compact manual chair and it worked!  He 
   can actually control it really well.  
   
   The second is even greater news to me.  While he was playing cards with a friend today
   a card fell on his foot.  When the friend picked it up from the foot, Ken could feel
   very normal touching sensation through his shoe.  Previously, all he could feel was 
   pressure.
   

 
   My competition was fun!   Videos  
   
   Successful trip with minor, but intense setbacks in Las Vegas (Come to think of it, a
   lot of people have trouble in Las Vegas).  We had to change planes there on the 
   return trip with only an hour to spare and, of course the gates were about a mile
   apart.  Ken and I had to wait until all the passengers were off the plane and the
   airline crew could bring the power chair up to the jetway; Kathy had gone ahead to
   the connecting flight to get them to hold the front seat for us.  Ken has to be lifted
   from his chair and carried to a seat, so the front bulkhead row is the easiest for 
   everyone.  We were taking it in stride, but the crew began to panic.  After about half 
   the passengers had deplaned a harried stewardess announced that the chair had arrived
   and stopped the queue so that Ken could be transferred and we would not miss the 
   connection.  She was a rather large and commanding personality whom everyone immediately
   obeyed.  I confess that I too, was somewhat cowed and when she "suggested" that Ken 
   first be placed in an "aisle" chair and rolled out into the jetway to be transferred 
   ino his chair.  This, despite my patient query that backing Ken's power chair into 
   the galley area and lifting him directly from the plane seat had worked wonderously
   already five times before.  "No! It's better with an aisle chair", she pressed.  
   I relented.  Somehow, Ken with arms and legs akimbo (he is 6-2) was perched teeteringly 
   on the dollhouse furniture size chair and finally laboriously wheeled out into the 
   jetway to the silent cheers of the waiting throng behind us.  Their relief was 
   premature however.  While I was struggling to help move Ken, I was peripherally aware
   of another struggle playing out on the jetway.  I could hear the sounds of Ken's chair
   motor reving back and forth and, I thought, the bangs of its frame slamming against 
   various sides of an enclosure.  In the jetway at last, we witnessed the final throes
   of the struggle.  A small, middle aged, hispanic baggage handler was unsuccessfully 
   manhandling Ken's three-hundred pound power chair in a furious attempt to extricate 
   it from the tiny elevator.  As he threw all his weight against it, the wheels slid 
   slightly but it barely budged.  After watching him in awe for a few moments I suggested
   he pull the lever to release the wheels.  Whereupon it rolled easily out and positioned
   next to Ken.  Our amazon stewardess decided at that point that the passengers waiting
   patiently behind us should be allowed to deplane before we transferred Ken and we waited,
   an island in the swiftly moving stream. 
   
   We arrived at the departure gate in plenty of time and relaxed only to reprise a struggle
   in the boarding process (not quite as bad).
   

      Ken got his learner's permit yesterday.  Believe it or not, he will soon be plying the
      freeways just like he used to do.  He turned in the paperwork today to embark on his 
      gauntlet (evaluation, training on the modifications and his license).  He has a promise
      in hand from his previous employer (Papa John's Pizza) for a job, part time at first.
      Ken is like he was as a fifteen year old, just embarking on the new adventure.  
   

   This is Kathy.  We've had two red letter days in a row.  On Wednesday Ken began his 
   evaluation for driving with a variety of screening tasks to assess him physically and 
   mentally.  Apparently he did just fine, because they took him out into the parking lot, 
   he rolled up the ramp into one of their vans and drove!  Wednesday he went for slow, 
   short spins around the parking lot, but Thursday he was on the road for nearly two 
   hours, getting up to 55 mph. at times!  The next step is to purchase a minivan and 
   turn it over to a company that equips it according to the list generated from the 
   screening and driving.  Then Ken will return to the company that did the screening 
   for at least ten more hours of training, this time in his personal vehicle.  They 
   will take him to the DMV for his road test, and then he's a man with a driver's license 
   and much more independence, and I'll lose my chauffeur status.  Of course, we've learned 
   to be patient, because nothing happens quickly, but in several months all should be 
   accomplished.  video Videos If the video doesn't show, 
   click here to download drivers and execute setup. 
 	
 
 
 
   A special fund in Texas, financed with driving fines will pay for the modifications and 
   equipment.  Since they can cost more than the van itself, we are beyond simple gratitude.
 
   Last year we would never have believed Ken could accomplish what he did these two days.  
   Technology, a healthier and stronger body, and Ken's will to move on all worked together 
   to make it happen.
 

      Ken is continuing his driver training.  The purchase of his van will come soon.  As 
      pointed out by one of my readers, it has been over a month since my last entry.
      Sorry,  I've been busy.
   

      Two days in a row!  Ken will get his driver's license Thursday, then the struggle with
      the bureaucracy to get the van modifications funded by the state.  They're good, but, 
      as always, slow.
   

      This is Kathy.  Red Letter Day for Ken on Wednesday.  He passed his driving test, 
      parallel parking and all!  The test was the standard test, just taken in a specially 
      equipped car.  We had to be up and out the door a couple of days last week and this 
      week for day-long training a little less than an hour from here.  Our helper has been 
      unavailable for the last three weeks--vacation then health issues of her own--but 
      hopefully back next week.  Those three mornings of help each week are sorely missed 
      when they don't happen, most especially on weeks when we have lots going on.  Ken and 
      I are both exhausted but happy his independence got such a boost.  It will still be a 
      few months before the funding is in place, the car is bought and equipped, and he's 
      on the road.  Then he's back to work. 

      I almost slipped by the date.  Yesterday marked the end of year 3.

      Good news -- and bad too.  First good: Ken starts work July 1.  However, he need surgery
      for bladder stone removal.  While relatively mild, there's no news of a surgery date and
      my mother -- almost 95 -- is within a week or so of death.  If that happens before
      the surgery, there could be complications on the trip to the funeral in Oregon.
      

      Up early so Ken can go to the Texas Medical Center for the surgery for bladder stone   
      removal.  Mom is hanging on -- perhaps on the subliminal level she is somehow aware of 
      Ken's complication, and has gracefully delayed her trip for him.
      

      Ken's surgery went so well that it seems much ado about nothing.  A little sleepy from
      the anesthetic, but recovery leaves little concern.  Now we can focus on mom.  I felt a 
      little shame that I was focusing so much on Ken while she is rapidly approaching her
      milestone.  She was a great lady, a fantastic seascape artist, and most of all, the best
      mother any man could have.  
      

      Ken has been working for about a month and, according to him, doing well.  I have not 
      written in awhile, possibly because I have less and less considered him to be handicapped  --
      that has to be a good thing.
      

      I got a little burned out from writing the blog and haven't done it for awhile.  A whole
      lot has happened since.  House remodeled: I'll be describing that in the next few days.
      Ken's van has been purchased and is being modified.