Tuesday, March 22, 2016

Day +168

Raul's video EEG was somewhat abnormal (as they expected), but he did not have any seizures! Neurology seemed more optimistic since his MRI did not show a change in the brain shrinkage. We may potentially do another a few months down the line, but most important will be his clinical symptoms. Right now there is no permanent damage evident from the cardiac arrest on the imaging, but that doesn't mean he won't have any.

Since Saturday he has been much more alert, and been staying awake all day/sleeping all night. On Saturday he screamed once at bedtime, not at all Sunday, and only once yesterday at bedtime. Today he has been more unhappy, unfortunately, but still alert. This morning his belly was bothering him and he threw up his meds., which upset him. I am looking forward to getting a GJ back so we don't have to keep putting things in his stomach that isn't working properly!

Yesterday he had a nosebleed, which was very scary after the last one. Unfortunately, along with him being more alert, he was also scared even though we all tried to stay calm. There were a couple times where he started to choke but thankfully was able to recover on his own. We did suction his mouth and caught a couple clots, as well as drained his g-tube. It was actually a pretty short nosebleed, but felt long since we were so worried about him choking! We gave him extra platelets, did two days of Amicar, and used a little oxygen until he calmed back down. He was most mad about the fact that we had to make him sit up until we were sure it had stopped!

After much discussion, we have decided to put off the PD cath surgery for now. The BMT team has always been somewhat concerned about infection and whether he would even tolerate PD, but those risks seemed doable and worth at least trying it. However, when the surgeon came by last night he was very concerned about the surgery itself and if Raul could tolerate it. He did end up putting Raul on the schedule for tomorrow despite his reservations, but he scared us enough that we decided to wait for now.

He may be more stable in the future, and we could do the surgery then, otherwise we will do 4ish days of HD a week in Boston when we go home. Hopefully once his CSA is weaned his kidney function will improve a bit and maybe we can go to only 3 days a week of dialysis. We will still be going to the OR tomorrow morning to switch back to his GJ tube and do his 6 month post-BMT biopsies.

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