Sunday, January 31

I just wanted to post this picture of Bill doing therapy on his day off!  To be fair though I made a deal that if he did some therapy, I would cook him dinner and bring it in for him.  Here he is using a mobile arm support.  This device allows him to move his arm without the normal resistance from gravity (the red and blue rubber bands are the mechanism here).  While his arm is in the mobile arm support he can move it both towards and away from his body in a horizontal plane as well us up and down in a vertical plane.  At this point, he can't do that much on his own.  As he gains more strength the rubber bands will be removed and he will have to work harder, which will in turn lead to gaining more strength.  Pretty cool.

Friday, January 29

This week was better than any of us could have imagined.  It seems like Bill really has turned that proverbial corner and was motivated, agreeable, and downright jovial this week.  After a bit of a showdown with his nurse on Monday regarding what time he should get up in the morning (anyone who knows Bill will surely agree that this is completely within character for him) something clicked and he stopped struggling against every single little thing.  I would hold my breath every morning this week, afraid that the pattern had finally broken, but it never did.

He continues to work on the anxiety and on Wednesday he met a therapy dog.  The dog happened to show up just as a procedure with his trach was being started.  The speech and respiratory therapists will deflate the air in the cuff that holds his trach in place so that when he exhales the air goes up past his vocal cords (rather than out through the hole in his throat) and he can talk.  For some reason, deflating his cuff has led to massive panic attacks the past week or so but he was so transfixed by the dog that he didn't panic at all.  I was not actually around when this happened, but I have been instructed by Bill to be there next week and meet the dog for myself.  I've seen this dog in the halls of the Shepherd Center and can say without a doubt that she is the most obese Rottweiler I've ever seen.  I heard she crawled into Bill's lap and stole his heart. 

I know that there will be other setbacks and bumps in the road, but it has been so great to have experienced this week.  For once things seemed to go better than expected and I hope Bill realizes that, too.

Request for Information

Does anyone have some spare internet surfing time?  Bill is asking me to do some research on modifying ATVs (specifically a side-by-side model like the Polaris Ranger) so that he can drive it himself.  I am having trouble finding time to do this and wonder if anyone else would like to take a look.  Leave a comment with links to anything you think might be interesting, pictures are particularly great.  We've seen the You Tube video of Alan transferring to his ATV and Bill is interested and mildly encouraged.  Alan is a C6-7 quad so he has a few more muscles (namely triceps) than Bill does at this point, so it might not be quite as easy for Bill.  However, we have no idea how much might come back and I think it's good for him to be thinking about this stuff.

Thanks!

Tuesday, January 26

It's only Tuesday but Bill has had a big week so far.  When I came in this morning Bill wanted to know what the temperature outside was and how warm it was supposed to get today.  I was a bit puzzled by these questions, but then he told me that his nurse (with whom he has been clashing with over any and everything the last few days) suggested Bill go outside for a bit before lunch if it was warm enough.  He was looking forward to this prospect although it may not be that obvious in the photo.  One of the things going on with Bill is that his affect (or the way he displays emotion) does not always match the emotions he says he has.  His facial expressions display his anger and fear, but the positive moods don't always work that way.  He will flash a smile now and then, but it's very fast and sometimes it seems more forced than genuine.  No one is sure if this is because of the brain injury, the fact that he went from physically active to quadriplegic in a matter of moments, or if it's because he's on a lot of medication.  Sorry for the digression there, this just seemed like a good place to describe some of that.

Anyway, yesterday he spent seven (grudging) hours in the chair, left his room twice, went to a group therapy session, and successfully worked himself down from an anxiety attack without medication!  Last night the chest tubes were removed (click here for a somewhat graphic photo of the chest tubes in place) and I heard that the PICC line (the IV line in his right arm) may be removed in the next few days.  It's very exciting to see so much of the medical hardware being removed.  After it comes out we are left with just the stomach feeding tube (which he no longer receives nutrition through, just extra medications) and the trach...

Which brings us finally to ventilator weaning.  I believe it has started.  Today the respiratory therapist tried to tweak back some of the settings without telling Bill and I don't believe that was working out well.  It will be interesting to see what, if any, agreement they come to.  Bill absolutely wants to get off the ventilator, but his anxiety is a real concern and when it gets out of control, he can't breathe very well.  And if he can't breathe very well, he gets more anxious.  I'm not sure what the best approach will be and I suspect that it will vary each day.

UPDATED: Another seven hours in the chair, another anxiety attack thwarted without medication, PICC line removed. 

Friday, January 22

Many of you have noticed that these posts are getting briefer and more intermittent.  There are a couple of reasons for this.  The respiratory issues have slowed things down quite a bit so there aren't a lot of big events to report.  I'm also exhausted at the end of the day (who knew rehab would wear the family out, too!) and recording events here falls by the wayside.  Finally, as I'm sure you can imagine, this whole experience is rough and I'm reluctant to share all of the details in such a public place.  Those are the reasons I've abandoned posting every day.

On to other things!  The week finished up pretty well.  Bill's occupational therapist has been working with him using assistive equipment to do things like eat, turn magazine pages, and type on a keyboard.  It's difficult and frustrating for him to have to retrain his body to do things that used to come so easily.  His physical therapist continues to work with him on strengthening the muscles that are still enervated in his arms and he's making great improvement there.  He is healing up nicely from the lung surgery he had Monday and we hope that the chest tubes will come out early next week.

There have also been a couple visitors this week who have been in a similar position that Bill is currently in.  They can relate to him in a way that none of the rest of us can, and they are also clear examples that he can have a life after spinal cord injury.  It's tough to know when someone might be ready to have those discussions and meet other disabled people, but I think this is happening at the right time.  Bill is still confined to his room because of the chest tubes and the suction device they are hooked up to, so he doesn't see many people and the folks he does see are not disabled.  I find the Shepherd Center to be a very inspiring place because there are so many people who are going about their daily lives, either working there, coming in for therapy, or just coming in to use the gyms.  It feels strange to call them disabled because they are clearly able- they just get around in wheelchairs instead of walking like I do.

Monday, January 18

Bill's surgery went very well today.  It turns out that the surgery he had was similar to the procedure I  linked to (steps 4, 5, and 6) a few days ago along with the pleurodesis procedure I described on Thursday.  If the pain meds they gave him today are any indication, the whole thing was just as brutal as it sounds.  He did very well and the surgery went off without any problems.  Even better news is that he was able to control his anxiety the whole time.  That alone is exciting stuff!  I hope I'm not getting my hopes too high, but I really think we are turning a corner.  His spirits have been so much better since Dad and Nancy were here for a visit; although, maybe his spirits are better because I was gone for a week...  Either way, he is so much stronger and more motivated than he was a few weeks ago.  He told me today he was looking forward to getting in the gym, working hard, and getting off the ventilator.  I know there will be many more rough patches ahead, but for now it's nice to hear him say things like that and see a genuine smile on his face.  I hope this lasts for awhile...

Thursday, January 14

Bill's right lung is still not great and he is scheduled to have surgery on Monday morning to correct it.  He's having a procedure known as a pleurodesis done.  If you refer to the picture in yesterday's post of the lungs, you can kind of see that there are two membranes surrounding the lung; the visceral membrane is closest to the lung and the parietal membrane is on the outside.  A pneumothorax occurs when air escapes and gets trapped between the two membranes.  A pleurodesis is the process by which those two membranes are stuck to one another by producing scar tissue.  This can either be done chemically or by physically irritating the membranes.  I think Bill's membranes will be physically irritated.  It sounds terrible, however if it means that his lung will no longer spontaneously collapse then I'm all for it.

Today was the medical conference with Bill, the family, and the doctors on his team.  This is the meeting we've been waiting for to find out more about his injury and what the big picture of his recovery will entail.  We did not learn anything new in the meeting, but it was still sobering to have the bits and pieces we've picked up confirmed.

Bill's injury is just as severe as we have been led to believe.  He is a C5 quadriplegic and this means that the last normally functioning area of his spinal cord is at cervical vertebra 5.  He has extensive damage at C6 and then everything is fine below that.  That's the kicker with spinal cord injury: it only takes one bad area to leave you disabled.  Currently there is no way to fix or bridge the bad area, although there is much research ongoing.

The American Spinal Injury Association has developed an impairment scale which is the standard used to assess the extent of spinal cord injury.  If you like, you can read an excellent description of spinal cord injury and the ASIA Impairment Scale here.  (Thanks for the link, Edie!)  Bill is currently classified as ASIA A.  This means that his doctors can't reliably measure sensation or motor function below the point of injury.  The key word here is reliably.  Bill may or may not have any sensation, I know that at times he has said he can feel touch on his feet or legs but it's usually when he can see someone actually touching him.  I think his brain may be playing tricks on him.  The ASIA Impairment Scale is not a perfect tool, it just happens to be the best one at the moment.  It also only measures what his current impairment is and makes absolutely no predictions about the future.  So, it's a bummer that he's at the far end of the scale, but it could change with time.   

With his level of injury he will have some use of his arms (biceps but not triceps) and hopefully in a year his wrist flexors (imagine the motion your wrist makes when you turn the throttle on a motorcycle).  His doctor told us that there is a less than 1% chance of him regaining the use of his hands.

With his level of injury he should be able to get off the ventilator, however with the current lung complications and his anxiety this may take some time.

The brain injury will likely heal itself with time.

To sum up our meeting, Bill's doctor considers a good outcome one year from now to be breathing on his own and wrist extensor function so that he can feed and groom himself.  He probably won't ever be independent because without triceps he will have little ability to transfer his own body from bed to wheelchair (if there were a fire, for example) and without finger dexterity he won't be able to perform detailed tasks.  He also does not have any control of his trunk muscles and will therefore not have good balance, so he could easily fall from his chair and not be able to get back in it by himself.

We did not learn anything new here today and I guess I've been reluctant to share all this sooner because I was hoping it wasn't true.  I am reminded again this evening of how lucky we, Bill included, are that it was not worse.  The spinal cord injury could have been higher and left him with no use of his arms and no ability to breathe on his own.  The brain injury could have been worse and left him a shell of the person he was before.  This is where we are now and we will all move forward.  At times I find the future overwhelming to consider, but I know that things will work out one way or another.  The one constant that I hear over and over again is that every person heals differently and some people recover more function than ever expected for no apparent reason.  Only time will tell.