As of today we have been in the hospital six months (admitted 9/16); a little over half a year at 186 days. Crazy to think about, and yet we aren't done yet, unfortunately. But at this point another month or two doesn't even feel that long compared to how long it has already been!
Raul's soluble il2 level was the same this week, and his other HLH markers were more or less the same as well, which is good since we have started weaning the steroids!
Raul has started peeing a tiny bit again, which is very exciting! It isn't enough to make a difference in his weight or labs, but it is a start. Today I met with the PD nurse and got some information on PD and the actual supplies/machine. We are still aiming to get the PD catheter in a week or two as long as he is stable.
Starting last night Raul was a lot more uncomfortable. It seems like it is his stomach, but it is hard to say for sure. He was up every few hours over night screaming, and it was constant for a while this morning. He also started holding his breath right before he would scream, which would drop his oxygen sats, though they recovered quickly. We got another ultrasound that looked okay.
A while back the pain management/palliative care team ran some genetic tests to find which medicines would work on Raul given that we have had so many issues with side effects in the past. They just got those results back, and based on those we are starting him on a low dose ketamine drip (targeted for pain not sedation). The fentanyl, which we thought might be helping, actually showed that it should be less effective. He is apparently lacking what is needed to metabolize certain types of medications. They were still figuring out the side effect piece, as some of the medicines that have given him such bad itching show that they should be effective for his pain as a last resort.
We met with neurology again today, but they did not really have anything new to add. They said we still just need to wait and see, especially with how many pain/sedative medications he has been on. They could not give us a time frame of when we might see improvement, or a time after which improvement would be unlikely. They also said they couldn't even do a reliable neuro. exam on him at this point due to his medications, his temperature (he had a fever this afternoon), and some of his lab abnormalities. But they did say that if the smiles we saw truly were a response, as they seemed to be, that that would be a good sign!