Day +146

After another long day of waiting around, we were able to move back up to the BMT floor at around 5:30! Raul is having a very hard time with what we think might be a combination of ICU delirium and withdrawl from his sedation medications. It is worst in the evening, and very hard to watch. He is getting medications, but sometimes they take a long time to work or don't work at all. 

Raul did get to have story time with his teacher this morning, which he seemed to like. And he actually also seemed to like his PT today; the stretching looked like it felt good. He slides himself down when we try to prop him up in bed, so we got a tumbleform chair to use with him until he is able to sit up on his own again. 

Some of his HLH labs were actually improved today, though the soluble IL2 won't be back until Wednesday. He did have a fever of 101.8 tonight, but we don't know the cause. It certainly didn't help his agitation! His BUN/Creatinine are a bit improved, and the nephrologist is hopeful that maybe his kidneys are starting to wake up a little.

We are really hoping that this delirium/withdrawl won't last too much longer!