Yesterday Rani was nine months old, I can't believe how quickly it has gone!!! and to celebrate Princess Rani decided to pull her Naso-Gastric tube out. Unfortunately due to the severe varices in her throat that even if knocked slightly could bleed no-one wants to put the tube back and because she has been fed this way for so long she won't take a bottle. Thankful she is getting everything from her TPN feeds that go into the vein in her next, so her Specialist said that if there are no bleeds in 7-10 days (as she has stopped again) he will again put a camera down her throat and see how they are going and put the tube down at the same time. The nurse are having a ball...NOT!!!...trying to give her her meds orally...lol
Both John and I had another meeting with the Transplant Co-ordinator after John finished work last night. She has been moved back to a Category 3 - State Wide. We are kind of happy as this means that at the moment she is stable and is able to continue gaining weight, but it also means that she will not be coming home until after the transplant and that could be months and months. It feels some what selfish to think this way, but it affects not only Rani, John and I, but our other 2 and my whole family. It is very exhausting goinginto the Hospital every day, frustrating as she is doing so well atm and hard as John and I just don't get to see Josh and Teagan. Plus it is not fair to ask my family to put their lives on hold until we get the call and expect my parents to keep Josh and Teagan at their house during the week indefinately. I know that they are happy to do it, but we feel bad.
So we are happy that she will be able to gain the weight and having an even higher rate of a coming out of the op, but frustrated as we have no idea when!!