Day +203

Today Raul got his third dose of Ruxolitinib; he only gets it on dialysis days. We drew his normal Sunday/Monday labs, but the IL2 and the cytokines take a few days to get results. His other inflammatory markers were still incredibly high, but we would not expect to see a change in his labs if the medicine is successful for about a week. So far we have not seen the even bigger drop in platelets that we thought we might with this medication, which is good. He has just gotten them once a day the past few days. We were able to go outside Saturday without Raul's IV pole! Unfortunately now it is supposed to rain for a week, but we are looking forward to getting back out.

I would say Raul's fevers are happening less frequently, though still daily. Unfortunately, he has now had his second positive blood culture from his PICC line. The first grew staph, and he has been getting vanco for that, so we added Linezolid now too. We have also started getting the reports back from where a spot on his head was biopsied, and so far it has several types of bacteria. He is already on so many antibiotics, that it doesn't really sound like we will do much different for it. Raul did also have another episode of severe bleeding from his arm, about 200ml, so they are re-checking one of his clotting factors to make sure it is okay. We noticed it a bit quicker this time, I think, and we held pressure and put on an absorbable hemostat layer under his bandage.

We began weaning Raul's CSA a couple weeks ago, and should be done on 5/13. This is the immunosuppressant he has been on since transplant. We first started weaning it around day +100, but then he was diagnosed with HLH so they put it back on for a while. It will be nice to get him off that so he has a better immune system!

Neurology was supposed to come by last week, but ended up only stopping by the doctors' room as they did not have anything to add at this point. He is still having fevers and still on a fentantyl drip, so he couldn't be fully assessed. Despite his fairly normal MRI, he is currently presenting as being severely affected by his cardiac arrest. We are happy though that he is no longer miserable and agitated! He has also been more alert since we have been weaning the sedation. He should be off his remaining sedative drip by the end of the week. There is still a chance of improvement, and we are hoping we will start getting smiles again soon if the new medication helps him feel better overall!

Due to some of his labs and symptoms endocrinology had recommended the team check Raul's thyroid. They expected the level to be high, but it actually came back slightly low. They will give him just a small dose of a medication to help this. Raul has also been having some GI trouble, which may have contributed to some dehydration, but since putting him back on scheduled immodium and adding fiber back to his formula that has started to improve.