Yesterday was a really hard day. Raul was totally miserable all day, and nothing really seemed to help, which was hard to watch. There was a lot of screaming, moaning, itching, pain, and just acting out of sorts. We gave him all his itch and pain medications, and also ativan, but nothing really helped. Thankfully he perked up a little in the evening, and then after more fentanyl and ativan, slept pretty well.
Today was much better. He was still tired and complaining of pain, but otherwise acting pretty normal. We even got him to sit up for OT this morning, and he was back to wanting to eat/drink all day! He built a building with suction cup toys with OT, and said he was going to be an architect like his Hapa and help make the plans. He took a good nap this afternoon during dialysis, which seemed much needed after yesterday! It was reassuring that his behavior was more normal today, but we will watch that as well as his headaches to see if we need to do any further imaging/testing related to his HLH.
Luckily he has not had major issues from the Campath so far. Last night he got a bit more gaggy during it, and his fever went up a little. They had warned that he might have high fevers, but I think his highest so far has been 101.5 He does get tylenol, benadryl, and decadron as pre-meds before the Campath. Tonight he slept for the last hour of dialysis, then woke up for a little bit, but went back to sleep at the beginning of his infusion and slept soundly through it.
Today was much better. He was still tired and complaining of pain, but otherwise acting pretty normal. We even got him to sit up for OT this morning, and he was back to wanting to eat/drink all day! He built a building with suction cup toys with OT, and said he was going to be an architect like his Hapa and help make the plans. He took a good nap this afternoon during dialysis, which seemed much needed after yesterday! It was reassuring that his behavior was more normal today, but we will watch that as well as his headaches to see if we need to do any further imaging/testing related to his HLH.
Luckily he has not had major issues from the Campath so far. Last night he got a bit more gaggy during it, and his fever went up a little. They had warned that he might have high fevers, but I think his highest so far has been 101.5 He does get tylenol, benadryl, and decadron as pre-meds before the Campath. Tonight he slept for the last hour of dialysis, then woke up for a little bit, but went back to sleep at the beginning of his infusion and slept soundly through it.
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