On Wednesday Raul had an echo in the morning, and dialysis in the afternoon. His echo showed a little left ventricle enlargement, but showed the function to be normal. His dialysis run was a bit complicated so the nephrologist stayed in the room for the full three hours with the dialysis nurse. We ended up getting off 900ml, but did have to give him blood pressure medicine to get through it. He also got a large blood transfusion during dialysis as his hemoglobin had dropped very low.
Raul has been waking up early every morning (like 4am), and watching movies. He has been very awake and alert overall, but doesn't seem too freaked out by being intubated. Since he seems comfortable, we are not going up on his sedation, though he does get extra doses here and there. Hopefully with less sedation and a better sleep pattern we will not end up with as bad ICU psychosis this time!
Yesterday they decided to start continuous dialysis since we had been having so much trouble with regular dialysis lately (no full runs/hadn't gotten him to his dry weight in about 10 days). So we started that in the afternoon, and then had to restart at night because the circuit clotted. Unfortunately, when it clots they can't rinse back his blood that is in the machine, so he lost about 160ml, but amazingly his hemoglobin didn't drop significantly. They had to call back in a dialysis nurse, and the doctor had to stay late. They got him back on around 10pm.
He also had a flexible ENT scope done at the bedside yesterday morning. ENT has been a bit resistant to look as they hadn't been sure how they would treat something even if they found it, but the ICU/BMT/Nephrology attendings were all firm in wanting it done! They didn't see anything major, so the last thing I heard yesterday was that they were not going to do anything further. However, around 8am this morning the ENT attending came in and asked if we knew he was going to the OR (neither the nurses or I did). They had gotten a cancellation so the ICU attending had snagged the slot for Raul for a more invasive scope. So we had to take him off continuous dialysis again and get him ready to go.
Raul is at a point where he could be extubated, but they had wanted to wait to see what ENT said, and we are now waiting to see if any more intervention will be needed. During today's scope they cauterized two spots in his nose, and packed it, but did not feel those were the sources of the major bleeding we have seen. They also found a decent sized ulcertation on one side and a pedunculated lesion (and ulceration?) on the other side of the posterior piriform sinuses. They felt that this ulceration could be the source of the bleeding, though it was not actively bleeding today. They do not know what the lesion is so took a sample for pathology. So now we wait to see if anything else will be done, and when we will be able to extubate him. For now we put him back on the continuous dialysis since it is gentler and he is not moving a lot anyway since he is intubated.
And lastly, amazingly Raul's soluble IL2 was NOT higher this week than last. However, it is still above normal, as are his other labs, so his HLH would be considered active. The new BMT attending is reading through his history and then either he or Dr. Tolar will reach out to Cincinnati again, as they have the top HLH research center. Dr. Tolar had talked to several HLH doctors when Raul was diagnosed, and at that time they all agreed with the treatment protocol we were doing. Raul's case is very complicated though, and he has not responded to first or second line treatments, so it will be nice to have more eyes on his case and maybe they can tailor a treatment to him.
Raul has been waking up early every morning (like 4am), and watching movies. He has been very awake and alert overall, but doesn't seem too freaked out by being intubated. Since he seems comfortable, we are not going up on his sedation, though he does get extra doses here and there. Hopefully with less sedation and a better sleep pattern we will not end up with as bad ICU psychosis this time!
Yesterday they decided to start continuous dialysis since we had been having so much trouble with regular dialysis lately (no full runs/hadn't gotten him to his dry weight in about 10 days). So we started that in the afternoon, and then had to restart at night because the circuit clotted. Unfortunately, when it clots they can't rinse back his blood that is in the machine, so he lost about 160ml, but amazingly his hemoglobin didn't drop significantly. They had to call back in a dialysis nurse, and the doctor had to stay late. They got him back on around 10pm.
He also had a flexible ENT scope done at the bedside yesterday morning. ENT has been a bit resistant to look as they hadn't been sure how they would treat something even if they found it, but the ICU/BMT/Nephrology attendings were all firm in wanting it done! They didn't see anything major, so the last thing I heard yesterday was that they were not going to do anything further. However, around 8am this morning the ENT attending came in and asked if we knew he was going to the OR (neither the nurses or I did). They had gotten a cancellation so the ICU attending had snagged the slot for Raul for a more invasive scope. So we had to take him off continuous dialysis again and get him ready to go.
Raul is at a point where he could be extubated, but they had wanted to wait to see what ENT said, and we are now waiting to see if any more intervention will be needed. During today's scope they cauterized two spots in his nose, and packed it, but did not feel those were the sources of the major bleeding we have seen. They also found a decent sized ulcertation on one side and a pedunculated lesion (and ulceration?) on the other side of the posterior piriform sinuses. They felt that this ulceration could be the source of the bleeding, though it was not actively bleeding today. They do not know what the lesion is so took a sample for pathology. So now we wait to see if anything else will be done, and when we will be able to extubate him. For now we put him back on the continuous dialysis since it is gentler and he is not moving a lot anyway since he is intubated.
And lastly, amazingly Raul's soluble IL2 was NOT higher this week than last. However, it is still above normal, as are his other labs, so his HLH would be considered active. The new BMT attending is reading through his history and then either he or Dr. Tolar will reach out to Cincinnati again, as they have the top HLH research center. Dr. Tolar had talked to several HLH doctors when Raul was diagnosed, and at that time they all agreed with the treatment protocol we were doing. Raul's case is very complicated though, and he has not responded to first or second line treatments, so it will be nice to have more eyes on his case and maybe they can tailor a treatment to him.
You guys are amazing!!! Please let us know if there is anything we can send or do from here. The boys and I are sending all our well wishes and so much love!! Xo
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