Thursday, November 8, 2007
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Wednesday, November 7, 2007
So we are saying no to transplant for now
Peter's bilirubin has dropped 21 points since we listed him in August! His CRP (C-Reactive Protein - an inflammatory marker) is normal for a few weeks now. Going by how the other Omegaven children have improved, we should see Peter's bilirubin hit normal within just a few more weeks. With a normal CRP and a normal bilirubin, we should be able to begin refeeding Peter and then see what his bowel can really handle since the liver inflammation should be gone. This is still all theory to some extent because none of the other children have pulled out of liver injury after this long. They have all gone on to liver/multivisceral transplant or, sadly, have died by this point. Peter is not just hanging on by a thread either. He has gotten remarkably stronger since the listing and has even started standing.
The transfusions still are frequent - every 3 to 4 weeks. The portal hypertension is probably still at play, as is the fragility of the enterocutaneous fistula and its proneness to bleed from the stoma site itself. The INR remains elevated, that is a bleeding number that would be better to be lowering at this point. The elevation of the INR and the low (but stable) albumin number may likely be due to his intestinal losses from the fistula, as opposed to the liver still being so sick. It is all hard to tell right now.
Peter is due to go for another check up in Boston in a few more weeks. We are actually going to drive him up vs Medflight, and we are going to be seen outpatient vs inpatient. Very exciting news.
The multivisceral/liver transplant call was one we would have accepted just two months ago when Peter seemed like he was not going to pull out. I hope we have made the right choice in saying no to transplant for now and at least seeing whether the bowel will work once the liver finishes the recovery it seems to be making.
In case anyone is wondering what changed after we listed him, we increased the dose of Omegaven by 11% since we hadn't adjusted the dose when Peter had gained weight. But probably more importantly, we pulled the feeding tube out. He was getting all he needed with TPN but we had trophic feeds going at 2mL an hour nonstop running through a sick bowel. Dr. Puder has seen with his studies that when the sick bowel is allowed to rest or to work less the bilirubin then begins to to down and the CRP goes down. The Omegaven allows the patient to have time for all of this to happen without the liver getting worse on TPN, and also seems to play a role in healing the liver with the omega 3s. Once those numbers are normal then the bowel can begin to be refed more aggressively in attempts to rehab the bowel. The liver injury does not seem to return once it has cleared. Peter's portal vein clot and his ever-draining bowel add additional complications into the picture making it unclear if Peter's course could follow that of so many of the other Omegaven children. We will see.
We have the most wonderful doctors at Children's Hospital Boston - Dr. Kamin, Dr. Kim, Dr. Puder. We are ever so grateful for their ongoing support. They never just "shelf" Peter as this continues on and on. They are respectful of our decisions and indecisions. They are genuinely nice people. What a true blessing!
The transfusions still are frequent - every 3 to 4 weeks. The portal hypertension is probably still at play, as is the fragility of the enterocutaneous fistula and its proneness to bleed from the stoma site itself. The INR remains elevated, that is a bleeding number that would be better to be lowering at this point. The elevation of the INR and the low (but stable) albumin number may likely be due to his intestinal losses from the fistula, as opposed to the liver still being so sick. It is all hard to tell right now.
Peter is due to go for another check up in Boston in a few more weeks. We are actually going to drive him up vs Medflight, and we are going to be seen outpatient vs inpatient. Very exciting news.
The multivisceral/liver transplant call was one we would have accepted just two months ago when Peter seemed like he was not going to pull out. I hope we have made the right choice in saying no to transplant for now and at least seeing whether the bowel will work once the liver finishes the recovery it seems to be making.
In case anyone is wondering what changed after we listed him, we increased the dose of Omegaven by 11% since we hadn't adjusted the dose when Peter had gained weight. But probably more importantly, we pulled the feeding tube out. He was getting all he needed with TPN but we had trophic feeds going at 2mL an hour nonstop running through a sick bowel. Dr. Puder has seen with his studies that when the sick bowel is allowed to rest or to work less the bilirubin then begins to to down and the CRP goes down. The Omegaven allows the patient to have time for all of this to happen without the liver getting worse on TPN, and also seems to play a role in healing the liver with the omega 3s. Once those numbers are normal then the bowel can begin to be refed more aggressively in attempts to rehab the bowel. The liver injury does not seem to return once it has cleared. Peter's portal vein clot and his ever-draining bowel add additional complications into the picture making it unclear if Peter's course could follow that of so many of the other Omegaven children. We will see.
We have the most wonderful doctors at Children's Hospital Boston - Dr. Kamin, Dr. Kim, Dr. Puder. We are ever so grateful for their ongoing support. They never just "shelf" Peter as this continues on and on. They are respectful of our decisions and indecisions. They are genuinely nice people. What a true blessing!
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