Tuesday, December 15

Although it got off to a bumpy start, today was another day of steady progress.  Bill started another breathing trial before I got to his room this morning (more about this in a moment) and something did not go well so they stopped the trial.  I learned much later in the day that his left lung had a lot of mucus in it and he was probably just unable to pull air into it.  The experience shook his confidence which was disappointing considering how well the trial went last night.  Anyway, after most of the junk was removed from his lung he had went on to have a good 2-hour trial in the afternoon and another good 2-hour trial this evening.

I am slowly realizing that my constant presence is not necessarily the best thing for Bill.  He sees me as not only his proxy, but also as his protector.  He wants me to intervene when the going gets tough and save him from whatever cruel treatment the hospital staff is cooking up next for him (like physical therapy or breathing trials).  This  not only makes me feel like a jerk, but it also does him absolutely no good.  His recovery is going to be more difficult that any of us can imagine and there will not be any ways to shortcut it.  So, I've found some diversion tactics that work well, at least for now, that I can engage and then slip out of the room.  I would tell you what these diversion tactics are but Bill is reading the blog now and I don't want to give my secrets away.  Sorry, buddy.  There appears to be some sort of hospital rule about not tossing out the family because whenever I try to tell people to kick me out they just hem and haw.  I guess this is good because it means I can have an honest conversation with Bill about why my presence is hindering his ability to believe in and rely on himself, but then again having that conversation with someone in the midst of an anxiety attack is really not very productive.  That's where we stand on that.

In other news, installation of the permanent pacemaker is pretty much the last thing Bill needs to have before he can be discharged to a rehabilitation facility.  The reason it hasn't gone is yet is because of the concern of an infection developing.  Bill needs to have a low white blood cell count, reasonable cultures from all his bodily fluids, and not be running a fever.  The first two he's got nailed but he keeps spiking a fever each day.  This could be caused by several things: infection, antibiotics, or nervous system goof-ups.  Infectious Diseases (a department within the hospital) has been collecting lots of extra fluids and checking him out very closely to rule out infection.  Once that's done, his antibiotic regimen can be scaled back, and then the doctors will feel confident that his fevers are related to his spinal cord injury.  After that happens (and I don't know when that might be) he can get the permanent pacemaker and then pack his bags.

We are making plans for rehabilitation and I will share more detail when we know more.  In general, he will need to be in an inpatient rehabiltiation facility for anywhere from 6-10 weeks depending on his medical needs and his health insurance benefits.  He has had some complications so far (all the issues with his heart and lungs) so I expect his stay in rehab to be at the long end of that range.  We want for him to be as independent as possible but we also understand that he will not be fully recovered in three short months from now.  It's hard to say what his post-rehab needs will be or where he will go directly after.  Obviously we would like to get him back into his own house but it might take some time before that is possible.  I want to send out a great, big, huge thanks to his friends Ben, Matt, Chris, and Steve for working on some projects there that will lead to better accessibility!