Day +165

Raul's comfort level has gone up and down a bit. He was very comfortable Wednesday night/Thursday, then more uncomfortable again Friday. Today has probably been his best day yet! He only screamed once, and it was when he was going to sleep, which can be a hard transition. The rest of the day he was very alert/awake, and gave us smiles on multiple occasions! He also did really well both sitting in my lab on the chair and sitting/stretching with PT. It was so nice to see him like this! Of course he wouldn't let me get any good pictures or videos of it, but I got a couple photos where you can tell he just had finished smiling.

Last night we got a repeat unsedated brain MRI, which was not significantly different than his one from a few weeks ago. This is good news, as we could have seen increased shrinkage at this point from the cardiac arrest. Today we started a 24 hour video EEG to rule out seizures.

During dialysis today we lowered his dry weight and pulled more fluid, as they think he could have lost some weight since he has been back on TPN/not getting formula. They are hoping that as he gets less agitated he will not need as many medicines for high BP, as he had come off of them before his cardiac arrest.

I also met with surgery this morning about the PD catheter, and I think they were relieved to see how good his skin on his abdomen is. His WBC/ANC dropped the other day, but now they are coming back up, so we are still looking at next week for the surgery. We may combine it with his 6 month post-bmt tests, might have derm. place more epifix on his knee, and will probably switch back to a GJ tube as he is not tolerating anything through his g-tube. We will put in a shorter GJ tube so that it won't irritate the spot that got the GJ intussusception before.