Day +62
Raul's blood pressure remained stable throughout last night, through today's dialysis, and through today's plasmapheresis, so he was able to return to the BMT floor early this evening! It was a long day with four hours of dialysis and about two of plasmapheresis. Every time he gets plasmapheresis they prime the tubing with blood at the start, which gives him a nice boost. He also got platelets twice today, and of course the plasma.
Raul's blood pressure remained stable throughout last night, through today's dialysis, and through today's plasmapheresis, so he was able to return to the BMT floor early this evening! It was a long day with four hours of dialysis and about two of plasmapheresis. Every time he gets plasmapheresis they prime the tubing with blood at the start, which gives him a nice boost. He also got platelets twice today, and of course the plasma.
Raul's fever curve has been a bit better, though he did still spike a higher temp. tonight (it did come down with tylenol at least). His diarrhea is still bad even without g-tube feeds, so we sent off another cdiff test, which came back negative. He is also needing the blow by oxygen again while sleeping tonight, but does okay when awake. His most recent viral test was negative for CMV, which is great news, though he still needs to continue the antiviral medication a bit longer.
Day +63
Today Raul slept in a bit, then had school and plasmapheresis. He got platelets again early in the morning, which makes the third time in about 24 hours. After plasmapheresis he actually got out of bed for about half an hour to sit by the window because there were some construction vehicles down below. Then we did his central line and PICC dressings before he took a nice nap. In the late afternoon we got him up again for PT, and he wasn't happy about it, but he did well! He seemed much happier today now that we are back in our normal room, and was a bit more talkative even.
The plan changed a bit today, and they are now putting the plasmapheresis on hold and instead going to give him the Eculizumab medication (something they say they have never used on this floor before). They are not sure if he has TTP or aHUS, but one test result that came back led them to believe the medication would be beneficial. The medication is usually used for aHUS, but even if it is TTP, there is a chance the medication would still help, there just isn't documentation on that. They cannot do both the medication and plasmapheresis at the same time as the plasmapheresis would pull out the medication. He is getting his first dose tonight, and the second will be Friday.
Day +63
Today Raul slept in a bit, then had school and plasmapheresis. He got platelets again early in the morning, which makes the third time in about 24 hours. After plasmapheresis he actually got out of bed for about half an hour to sit by the window because there were some construction vehicles down below. Then we did his central line and PICC dressings before he took a nice nap. In the late afternoon we got him up again for PT, and he wasn't happy about it, but he did well! He seemed much happier today now that we are back in our normal room, and was a bit more talkative even.
The plan changed a bit today, and they are now putting the plasmapheresis on hold and instead going to give him the Eculizumab medication (something they say they have never used on this floor before). They are not sure if he has TTP or aHUS, but one test result that came back led them to believe the medication would be beneficial. The medication is usually used for aHUS, but even if it is TTP, there is a chance the medication would still help, there just isn't documentation on that. They cannot do both the medication and plasmapheresis at the same time as the plasmapheresis would pull out the medication. He is getting his first dose tonight, and the second will be Friday.
aHUS
is incredibly rare, even more so than TTP, I think. The doctors here
are consulting with a team in Cincinnati that has more experience with
these conditions, and we are waiting for his genetic testing results. It
is hard not to know for sure which condition he has yet, and to have to
guess a bit with the treatment, but I am hoping we will start to see
some improvement!
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