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.