We're on The List!

Today we have BIG news. Faybree is listed on the Lung Transplant list. As you can imagine we have mixed feelings about it. We feel she is doing well, better than she was in Florida, so we are hopeful that she will prove the doctors wrong and get better. The other thing is if she gets a lung offered to her soon and she is the way she is now, it is going to be difficult to make that decision to move forward knowing she is doing pretty well. The only thing is, that she has been stable since she has been here and really hasn't made any more progress. That is what the doctors worry about. But, as we all know she does everything different. Her oxygen is at the lowest we have seen it in a long time. It is at 30% and room air is at 21%, so she is doing well in that aspect. The only bad thing is her settings on the oscillator are still kind of high b.c of what it does for her with her disease. That is where we might run into problems in ever getting her off of this. But, the best news is she has done better than when she was in Florida. She is off of 3 meds and her settings have gone down. That is progress to me. Although, she has her moments, like all children do. She is human after all. It seems like she is a bionic baby with all the tubes and wires she has though. But, as you all know that doing a lung transplant exchanges one problem for another. They pretty much tell us it is basically prolonging her life, that is isn't a fix. We are determined to beat the odds and hope and pray that medicine will advance as she gets older.

We also finally got a car today. Pretty cute one too. It is a black Mazda 6. Not to bad. Of course it is a rental. Now we can get around town a little bit and get some things we need. We are hoping to get into the Ronald McDonald apartments on Monday b.c the lady in charge is out of the office until then. So, until then. I will be in touch.