Listed for Transplant

Though this is our first posting on a "site" about Peter, we are starting from where we are now. We'll post some history later on.

Peter and I are home from Children's Hospital Boston from his routine three day visit, that this time turned into a 14 day visit. While Peter is still "healthy" enough to go home again with private duty nursing continuing to help, we are anticipating transplant to be sometime soon. Peter was so happy to be home! He wanted to be surrounded by his toys and hold them all at once. Lots of smiles for his siblings and from his siblings!

We have been waiting for Peter to recover from his liver and bowel injuries since June 2006. He still remains on TPN and Omegaven and has 3 urimeter bags, one wound vac, two ostomies, one fistula, and private duty nursing to help us out with all of his needs. (UPDATE: we got rid of the wound vac and added another ostomy bag with urimeter... so now we see three ostomies and 4 urimeter bags. It has simplified his care some though.)

As we sent out in our email, on August 10, 2007 we listed Peter for a multivisceral transplant at Children's Hospital Boston. This will be a transplant of the liver and intestine. It will also include the pancreas, lower 2/3 of the stomach, and spleen, as is fairly commonly done in a multivisceral transplant, and necessarily so for Peter due to all of the injury that occured within the bowel. This operation will also get rid of the portal vein clot that has made Peter's illness all the more complex. It will also get rid of the bags, fistula, transfusions, nursing needs, and restore Peter back to a normal activity level. With his current set up he is quite weighed down and physical activity is limited.

This had been a difficult decision for us up until now, as we had been putting so much hope into Peter's recovery and ability to eventually pull out of this mess himself. The Omegaven that we originally came up here for has now helped 49 (and counting) babies pull out of TPN (IV nutrition) liver injury, but Peter's liver injury is also due to the original arteriovenous malformation and the portal vein clot, making recovery without transplant not likely.

The difficulty of deciding whether to list Peter or to continue to wait and see if he heals himself seemed to lift away this week. Meeting three other multivisceral transplant children and their families has made us feel that this is truly a hopeful operation that holds real promise in restoring Peter to health.

(FYI - For anyone who is following the progress of Omegaven as a promising lipid for prevention of TPN-related liver injury, the FDA has recently given a million dollars in grant monies to continue Omegaven testing. It does seem to hold much promise for prevention and for reversal of TPN liver injury... but of course Peter is going to be one of the exceptions most likely due to the portal clot. There are several other hospitals now incorporating Omegaven into their TPN regimes. Children's Hospital in Pittsburgh, where many TPN-related-liver-injury transplants are performed, is one of those hospitals now using Omegaven too, after seeing repeated success in the patients they sent to Boston for Omegaven.)

Please keep Peter in your prayers. The prayers have done wonders for him so far. Despite his tubes, illness, hospitalizations, he is a strong little boy. As Kathryn's grandmother put it, "Peter just doesn't know he is sick." And as his sister put it, "I think Peter is very brave. I think he is going to be the bravest of all the brothers."

Keeping faith in God and knowing that God is good,
Kathryn and Chris