Friday, March 4, 2016

Day +150

Last night wasn't too bad, though still a little freaking out in the evening and a couple short ones overnight. He was pretty sleepy today, but did see his teacher and had dialysis. We stopped his dialysis at 3 hours instead of doing the full four as we thought he might be having belly cramping and a few other issues from pulling a lot of fluid. He did calm down after dialysis, which was good. 

In other medical news, we stopped two of his antibiotics today and may stop the last one tomorrow if he stays fever free. We are slowing working on weaning some of his pain/sedative medications. We weaned the fentanyl drip a little yesterday, and today weaned his ativan dose a little (but left it on the same schedule for now). It is hard with the delirium/agitation, because the medications help the symptoms, but at times can actually cause the confusion to last longer. 

The neurologist came by this morning and said basically the same thing the BMT team told us yesterday about the MRI. He did say the shrinkage is not surprising, and that he would suspect that possibly half the patients on our floor would have some due to how sick they are and the medications they are on. And nephrology said the same thing about their patients, so it sounds like there was little chance he WOULDN'T have that issue. He agreed that we will just have to follow how he does clinically and wait and see. He did say again that the good news is that due to the lack of focal damage, at this time there are no functions that we know for sure cannot recover. 

The best part of our day was in the late afternoon, as Raul seemed much more interactive and alert! He actually seemed to be smiling in response to what we were saying when we were trying to tell jokes and make him laugh. He also was intentionally opening his mouth for his mint spray when I showed it to him/asked if he wanted some. And he would open it again if I asked if he wanted more. Of course when I tried to get a photo or video of either of these things he would stop; silly boy!


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