Sarah had blood drawn today in order for her to be officially listed. Good news is that she has put on some weight, no doubt due to the TPN IV's she is hooked to 24/7. She is at 14 lbs., 2 oz. On the other side, her PELD score (which determines the urgency of a transplant) actually DROPPED from 9 to -2. A high PELD score is 30 and the average is 15. Don't know what that all means for her except at least for now the need for a liver is not urgent. I have to ask the transplant nurse coordinator about the whole determination of the score. It doesn't mean the varices are gone but that the liver is at least processing to some degree. We still could be at risk for more blood episodes. I still would personally like a liver sooner than later but God's timing is perfect and we continue to stand on His faithfulness.
Next Tuesday Patty will head to Children's for regular transplant appointments and will meet with Dr. Healey during that visit. Sarah will have more blood drawn that morning. If all looks well, she won't head back down until April 6 when another GI scope is scheduled. That should give us an idea of how her varices are doing.
Patty is doing well with the TPN change out every evening. Tonight she did the setup and swap on her own without any questions for home care. Praise God! Please keep praying she gets more confident each evening and that God provides the peace necessary. This stuff is not for the faint of heart, let me tell you.
This weekend I hope to post something about Caleb and Katarina.