Waiting here in limbo

Mom arrived in Reno on Sunday and we drove down to Palo Alto on Tuesday in the early morning hours only to find out that while Joaquin has been given the clearance and go-ahead for the transplant on Monday, I have not. It seems that all of my tests have come back "perfect" except for my PTT factor - a test that measures clotting time in plasma. It appears as though it's a little on the high side, the normal range being 29 and mine being 35 - which isn't too high, but the adult nephrology doctor, Dr. Scandling, is "conservative" and will not give me the clearance for the transplant. I've had this test done three times - the first it was high, the second normal, the third high, and now we are waiting for the fourth. So we were given two choices - 1) we could go ahead and act as though we are doing the transplant on Monday and wait for the blood work that they are redoing on me in the hopes that everything will clear but knowing that everything might not clear and that we might not hear back from the blood tests until most of the family has arrived and if everything does not clear then we will not be doing the transplant for another two weeks or 2) we could just postpone the transplant for two weeks until September 11th. At first we thought the blood work might not come back until Monday - the day of transplant - but then found out that it would be back today, Thursday.

So Mom and I decided to stay thinking we would hear from Cathy, the transplant coordinator, today. Unfortunately Cathy is not very good at getting back to us when she says she will. I find it very unprofessional and inconsiderate, to be honest. It makes me feel like she doesn't feel like I am part of this team. It would not be hard at all for her to just make a quick call to say that the bloodwork was back or wasn't... What I think is going is that they received the blood tests back and they are waiting on the adult nephrologist to see them. But still - she knows that we are waiting here for her to call. Our families are waiting, we are waiting. So I plan on addressing this issue of telling us she will call us and then not calling. And I also plan on either writing a letter to someone or explaining our frustrations in a patient satisfactory survey that we receive after our doctor and/or hospital visits.

Otherwise, I am feeling very ready for this to happen. I am ready. But we are waiting in limbo at the Ronald McDonald House in Palo Alto, waiting and waiting. Chris and I have talked about how if something were to come up and the transplant could not happen for whatever reason, it is meant to be and I will be fine if the transplant gets postponed - it's meant to be either way.

In other news, Joaquin is cutting his top two teeth and has been a wild animal the past two days. Coincidence? I think so.