Christopher's Rehab/Recovery 11

Thursday, May 13, 2010, 9:00 pm

On Wednesday morning we had our 'Family Meeting' with the three Rehab Doctors, three Therapists, the social worker and our health insurance representative.  The purpose of the meeting was to give us an accurate picture of how Christopher is progressing, where his strengths and weaknesses lie, what he needs to accomplish before he's ready to go home, and what to expect once he is home and beyond.  The consensus, as has been expressed previously is that Chris is recovering at an astonishing rate and they are very pleased with all that they are seeing.  It was only a week ago that they told us to expect him to possibly be in his agitated, belligerent state and in the 'net bed' for up to three weeks.  He, as we know, moved in and out of that stage in less than a week.  

Physically, Chris is doing exceptionally well.  He has a small balance problem and is unsteady when navigating steps.  His endurance also needs to increase before he is ready to go home.  He struggles with focus.  This is a general issue that seems to encompass everything he does.  Staying on task and topic, whether it be physical or cognitive is difficult for him right now.  He takes things very literally.  Nicole, his PT told us that a common response to a request she has made of Chris is, "You said we were doing (such-and-such), so that's ALL we're doing."  He wants to move at a rapid pace in whatever he is doing.  This is a cognitive issue, and he is not so much interested in doing things properly...he just wants to get them DONE!  He doesn't understand his limitations (eg: that his balance is nothing like it was previously), so he is prone to doing something that he is not yet ready for.  He also is experiencing decreased inhibition.  He will talk to anyone and everyone about absolutely everything...often repeating the same things over and over.

Patty, Christopher's OT (Occupational Therapist) noted that he becomes frustrated very quickly and overwhelmed quite easily (this is one of the reasons that his visitors are limited and the time spent with him is short).  He believes that he is at a higher level cognitively and physically than he really is.  He has always been very realistic about his limitations, so this is new for Chris.  One thing that is very common in brain injury patients is for common sense is to be impeded.  For example, he doesn't think to look both ways, or even ONE way before crossing the street.  In many ways, his behavior and reasoning are much like that of a toddler.  The difficult thing is that holding hands while crossing the road is not really something he is inclined to do at the age of thirteen!  

The report from Christopher's Speech Therapist, Donna is that his long-term memory is great but the short-term memory is not good at all.  She has been evaluating his memory, judgment and logic.  He has begun telling stories, mostly about his accident and he is really embellishing them.  This is quite common for brain injured people.  She believes that by September he will begin back to school, but he will likely still need assistance with short-term memory.  The school will need to become involved, possibly making accommodations such as help with taking notes, getting from room to room, sitting in the front of the room and possibly starting back for only half of the day.  

As far as his insight, he struggles with "if/then" statements.  If I were to say to him, "If you were in school, then what class would you be in right now?" he would say, "But I'm not in school right now..."  He really couldn't get past the "IF".  The other thing that Donna has noted is that when he doesn't perform well, he tends to blame it on his accident, "Well... I DID almost die!"  "Well...I WAS in a coma for eight days"  "Well...I FORGOT everything because I almost died and was in a coma for eight days and in the ICU for twelve days, so I'm just now beginning to remember things."  He has told me numerous times that one of the reasons he dislikes therapy is that they ask him to do things they KNOW he cannot do, just to make him look stupid.  Christopher is a child who is unaccustomed to not understanding his world and not being able to do whatever he attempts, so this is immensely frustrating and he really does feel stupid and he hates that!  (above photo: Chris with Dr. Chu and Dr. Tran)

Now then, for those of you who knew Christopher before his accident, you know that many of these obstacles that were brought up were part of who he is.  He has always enjoyed talking with adults, whether he knew them or not, he tends to do things quickly, and he has always been a terrific confabulator.  The difference now is that all of these traits are exaggerated and there is no convincing him that he needs to 'tone things down.'  There's not a lot of reasoning to be done with him.  

We need to be vigilant about watching him when out in public because he might just dart out into the street.  The most pressing issue is Christopher's safety because of his lack of judgment and insight, so we all need to think of him as being a 'walking wounded'.  We are going to have a security system installed in our home before he leaves the hospital so that we don't have to worry as much about him walking out the door unattended.  We will just have to be vigilant about remembering to use it!  Severe brain injuries take a year or more to recover from, and we will need to be unbelievably patient during that time.  

I am feeling overwhelmed and exhausted tonight.  Bringing him home is both exciting and terrifying for me.  This is all just so big...keeping stimulation to a minimum yet keeping him stimulated enough to continue his recovery...making sure that he stays safe...that he doesn't walk out of the house without me...that he doesn't dart out into the street without looking...that he doesn't stumble and fall and hit his head again...re-teaching him things I taught him many years ago...worrying about the poor choices he is bound to make...hoping to have the clarity of mind I will need to make decisions about loosening or tightening the leash he must be on...having enough patience to explain to him for the ten-thousandth time why therapy is necessary, why he can't ride his bike, why he can't go hang out with his friends, why he has to be with me all the time, why he can't be independent like he was only a month ago.  

I hope I have the strength I will need to endure all that is before me.  I'm not really sure how I will do it.  It is when I begin thinking about this too much that the tears flow.  I'm sure it is better to just keep moving forward, one step at a time.  To not over-think any of it.  To expect the unexpected.  To anticipate absolutely anything.  To trust that if I made it this far, I can handle whatever comes my way.  I believe that I have no choice...

Love, Laura