Today is day +99, and we have been in the hospital 120 days! Raul only needed blood twice in the past week, which is great! He has still needed platelets more often, though. His fevers are about the same. WBC/ANC still within normal range. Bilirubin still high, both direct and total. Because of his bilirubin he had another ultrasound today, which is generally unchanged. His liver and kidneys are still enlarged, and his spleen is borderline. The ultrasound basically just showed chronic problems with his liver and kidneys, but nothing specific that would help explain the high bilirubin. He also had a repeat chest CT yesterday, which was similar to the past ones, and showed some micronodules.
We have stayed at 60 ml/hr for Raul's formula with the baby food green beans mixed in. It is a little hard to tell if that is helping, but I think it is. He is still getting a little dehydrated from the amount of stool, so has been very thirsty! His BUN has been much better the past week, and we are hoping to go to only having to do dialysis three days a week. Today is the first time in three months that we have gone two days without dialysis! We have started weaning Raul's CSA, which will take 8-10 weeks, so hopefully that will help his kidneys too!
Two nights ago Raul's blood pressure stayed low after dialysis, and we just assumed they had pulled too much so he got a fluid bolus, which helped minimally. However, his BP never really rebounded, and has stayed pretty low since last night even without dialysis. Last night he got several fluid boluses, and when that didn't help we added back more antibiotics. Today they were concerned he was septic, though thankfully his BP has not dropped any lower, so if he is it is not as severe as last time. He is also still acting like his normal self.
We did hold off on his +100 day skin biopsies, as we did not want to cause his BP to drop any lower. His engraftment studies were sent off, so hopefully we will know about those at the end of this week or early next week. His low BP also contributed to our decision to skip dialysis today, as his BUN was okay and they likely would not have been able to pull much fluid anyway. His BP has stayed low but stable, though they are considering adding a medicine to raise it anyway even though it is not dangerously low at this point.
We are now trying to get Raul to sit at his table for school
We have stayed at 60 ml/hr for Raul's formula with the baby food green beans mixed in. It is a little hard to tell if that is helping, but I think it is. He is still getting a little dehydrated from the amount of stool, so has been very thirsty! His BUN has been much better the past week, and we are hoping to go to only having to do dialysis three days a week. Today is the first time in three months that we have gone two days without dialysis! We have started weaning Raul's CSA, which will take 8-10 weeks, so hopefully that will help his kidneys too!
Two nights ago Raul's blood pressure stayed low after dialysis, and we just assumed they had pulled too much so he got a fluid bolus, which helped minimally. However, his BP never really rebounded, and has stayed pretty low since last night even without dialysis. Last night he got several fluid boluses, and when that didn't help we added back more antibiotics. Today they were concerned he was septic, though thankfully his BP has not dropped any lower, so if he is it is not as severe as last time. He is also still acting like his normal self.
We did hold off on his +100 day skin biopsies, as we did not want to cause his BP to drop any lower. His engraftment studies were sent off, so hopefully we will know about those at the end of this week or early next week. His low BP also contributed to our decision to skip dialysis today, as his BUN was okay and they likely would not have been able to pull much fluid anyway. His BP has stayed low but stable, though they are considering adding a medicine to raise it anyway even though it is not dangerously low at this point.
We are now trying to get Raul to sit at his table for school
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