Christopher's Rehab/Recovery 2

Tuesday, May 4, 2010

6:30 am
Christopher seems to like the early morning 4:30 hour. That is the time that I was woken by the commotion he was creating today.  I included this photo of him in yesterday's e-mail, but I didn't explain his bed.  It is called a 'veil bed' and it is for his safety.  He is very confused, not understanding that he is too unsteady to walk unaccompanied, and wanting desperately to leave the hospital, so the best way to keep him safe is to keep him in there.  It turned out that at 4:30, he needed to go to the bathroom, NOW, but getting there with an IV in his foot is not a quick and easy task.  His IV alarm was going off because he had kinked the line, he was insistent that I let him go immediately, the IV was plugged into the wall and I couldn't reach the cord because there was not enough room to squeeze between Chris, his bed and my chair, and the nurse's call button was also beyond my reach.  Add to that my concern about keeping things quiet for his roommate and his mom who were still asleep (it was 4:30 in the morning)!  Where was that 24-hour ICU nurse???  Needless to say, I was relieved when a nurse stopped by to check out the alarm that was going off.  She unplugged the IV and helped us navigate our way to the bathroom, which is much like an obstacle course.  I won't go into detail about what transpired once we got into the bathroom, but suffice it to say that he went to bed last night, my sweet boy, saying, "I love you, Mom" and woke up this morning feeling rather belligerent.  
 
Getting back into bed, it was once again time for his medicine, which he didn't want to take (he never does).... so I battled with him over that.  I then zipped the net on his bed shut and we have been duking it out ever since.  He has been arguing with me relentlessly for more than an hour, vacillating between begging me to please let him out so that he can go home and telling me that this is all my fault and I am being so mean to him.  I now wish that my most difficult task was the care and feeding of Christopher...THAT I can handle...easily.  THIS has me on my knees...

8:15 pm
Christopher's nurse during the night was a woman by the name of Esther and I quickly grew to love her.  Our opinion on waking him up throughout the night, every couple of hours to give him meds was the same.  This needed to be streamlined, his medicine schedule consisting of receiving all meds at the same time and only during the day.  No more wake-up calls during the night.  It simply wasn't worth it because he became so agitated and had a difficult time getting back to sleep.  By the time his Dr. came in to see Chris this morning, that schedule had been altered to better meet his needs.  Success!  Paul and Nick arrived around 9:30 am and Christopher was having his first PT (physical therapy) session, so I was down in the cafeteria having a cup of coffee.  I wasn't long before I got a call from his nurse, Penny saying that he was asking where I was and getting rather upset.  We headed upstairs and Paul and Nick got their first glimpse of young Christopher... the belligerent young Christopher.    We were with him for about 45 minutes and during that time, this was pretty typical of a 30-second 'exchange':

Chris:  Okay, let's go home.

Paul:  We can't go home right now Bud.

Chris:  Why not?

Laura:  Because we need to stay in the hospital so that you can heal from your accident.

Chris:  But I just don't understand why we can't leave.  This is so irritating!

Paul:  Because the Dr. said that you have to stay until your body has healed

Chris:  Come on you guys, this is crazy!  Let's just...you just go get the car and let's head home.

Laura:  I wish we could do that, Christopher, but we have to stay here.  You're having your speech therapy soon.  They're going to help you understand what's going on and work on helping you to think more clearly.

Chris:  Okay, then we'll go home after.

Paul:  No, we're going to have lunch after speech therapy.

Chris:  Okay, then we'll go home.

Paul:  No, not then.

Chris:  Nick, just take me home!

Nick:  Sorry Buddy, I can't.

Chris:  (starting to cry) This is so unfair.  I'm not sick anymore.  I'm just fine and the Dr. said that I could go home when I'm fine, so come on,,,let's go...

Laura:  Christopher, we really need you to listen to us and trust us.

Chris:  I am, but you guys aren't listening to me.  You're just ignoring me.  You don't care what I say.  Just take me home now!

Paul, Laura and Nick:  (Inward moaning....)

I was quite frustrated with the so-called 'transition' from the ICU to Rehab and the ensuing difficulties that I experienced throughout the 19 hours that Christopher had been there, so we requested a meeting with the three Rehab Dr.'s, Dr. Neufeld, Dr. Tram and Dr. Chu

We then talked about our expectations for Christopher's rehab and recovery.  They have only begun to assess him so we will have to wait until next week to get a more accurate assessment, but for now, they are very encouraged by his progress.  They reminded us that on a scale from mild to severe, Christopher's brain injury falls into the severe category.  After all, he was in a coma for 8 days and in the ICU for 12.  That speaks for itself.  But the recovery he has shown us since coming out of his coma is remarkable.  His speech is very clear, though he struggles to find words and compose thoughts much of the time.  Dr. Neufeld said this to us, "His agitation is a good thing... We have some parents on this floor just praying for belligerence in their child..."  So belligerence is a good thing?  I'm going to need to keep reminding myself of that.  What it means is that he is bothered by his cognitive abilities.  He is aware, to some extent that what he is able to think and say is far less than what he is capable of.  Christopher is dissatisfied with his performance.  Makes sense.  Belligerence is a good thing.... 

They anticipate that he will be an inpatient in Rehab for at least month.  They predict that he will be back in school by the fall.  Full recovery?  No way to predict that.  Christopher will let us know.  As far as guests, Dr. Neufeld has asked that only immediate family visit him for now.  He is just so confused and our main goal at this point is to orient him to his surroundings, so less stimulation will help him.  

Just before I headed home this afternoon, Christopher was sleeping in his bed, all zipped up, so Paul, Nick and I sat in the lounge and chatted.  When we got back to his room, there was lots of commotion.  It turns out that he had figured out how to get out of the inescapable net bed... some neurons must be firing properly!  Good boy, Christopher!  Keep fighting!  Paul has been with him all afternoon and is spending the night at the hospital.  He helped him get into the shower this afternoon and he sat on a seat in there for 15-20 minutes holding the hand sprayer.  He was calm in there the whole time and kept saying how good it felt.  He said that if Christopher was a 10 on a scale of 1 to 10 this morning, he would give him a 7 this evening.  If he said that he wanted to go home 1000 times this morning, that is now down to only 500.  Remember, we are looking at trends and baby steps.  He slept most of the afternoon and evening and is now asleep again.  He is so exhausted and we are glad that he is resting his tormented mind.  That is just what he needs.  

He hasn't blessed us with nearly the number of 'Christopherisms' in the past 2 days.  He's been a bit too agitated to say the funny things...his thoughts have leaned more towards frustration.  I have managed to compile a few for you, so here you go...

*Mae to Chris:  "Hey Chris, did you know that our whole church prayed for you last Sunday during each service?  Everyone got down on their knees and prayed...just for you."  Chris:  "They would never do that!"  Mae:  "But they did!"  Chris:  "No...they would never do that!"  (note:  This is a 'non-kneeling-while-praying' church and they REALLY did...I guess it was quite a sight to see hundreds of adults and children on their knees in prayer for one very sick little boy...)

*In the ICU, Sara, his nurse was trying to put the thermometer under his arm to take his temperature.  He would have nothing to do with it, so she said, "Will you count with me to twenty?"  Chris:  "one, two...TEN!  Okay, take it out!"

*Chris told Nick that his new socks were 'fantastic' and his new shoes were 'sick!'

*Laura:  "Okay, I've got a menu here...shall I read your choices for lunch to you?"  Chris:  "I'll have HOME!"

Well, that's about it for today.  This day that started out at 4:30 am with a belligerent and agitated boy, quickly led to a heavy heart, discouragement and many tears for his mother is now ending with a more peaceful little man, and a mother who feels hopeful and after a little rest will be ready to face tomorrow.  I want to thank my friends who were there for me today.  I honestly don't know how I would get through this without your kindness, support, love and 'voice of reason.'  Sometimes it is difficult to stand back and look at the bigger picture.  I am simply too close to the situation.  I forget that to take care of myself is to take care of my child.  Please don't underestimate your value...each and every one of you.  
With much love, Laura