Late yesterday afternoon the doctors decided to discharge Shelby. They admitted us thinking her sats were doing something that they're not; there was mega miscommunication :-( It is very unfortunate that it happened, especially since Shelby really likes the hospital. She was very sad to come home. But, good that did come from it was that we let the doctors know how we would like more support from them in expediting our potential living donors with the testing and getting results process. They admitted that this is taking too long; that you usually don't have to go through so many people to find a match. Our next person will be #5 to be tested. The plan is for the head liver doctor at Children's to call Northwestern first thing Monday morning and put the pressure on them to get things rolling. The testing will probably still only happen on Thursday. They only do it on other days if the person needing the organ has 24-48 hours to live. We don't want to be in that situation.
I also initiated the process on Thursday to get Shelby listed in St. Louis. Scott and I need to talk this weekend and see if we are going to proceed with that. Monday morning the nurse will call me and make arrangements for us to come down there and go through the transplant evaluation. That will be a 2-day process and they would admit Shelby to the hospital there for it. It is normally outpatient, but with Shelby's oxygen needs, it would be easier on all of us if she's admitted. We cannot take that much oxygen with us. Using the hospital's is the easiest way to do this. As it is for the drive down and back we'll need to take at least 8 large O2 tanks with us. We hate the thought of going to another center when Children's has been taking care of Shelby for almost a decade, but we also cannot let our daughter not get a liver.
Thank you all who have sent cards already. I'll try to get the picture of them on our living room wall uploaded later. Please, keep the prayers coming. Keep spreading the word of the need for organ donors. Make sure you are an organ donor. Thank you.