May 4, 2011

So let me start by apoligizing for taking so long to put a new post up. Transfering to Gainsville has been hard on all of us. Not just the drive, but meeting all new doctors, nurses, surgeons, etc. We are finally after a month starting to adjust. Grace has had a few scares in the last month but, has pulled through. We have come to a point where we can not wait much longer for a heart. Her function in her heart has improved a little since the heart attack, but not enough that she can come off the venilator. They did a procedure this morning, called a cath test. They got some good pictures of her heart and her pressured were better than expected. After returning back from this proceedure she decided to give us a scare again and kept dropping her oxygen levels. After about 3 hours of adjusting mediences and a few other things she seemed to settle out.
They are coming to the conculsions from her dropping her stats again today and the outcome of the cath lab that we need to move foward with the second surgery that she should have had before she became a part of the transplant list. This surgery would not change her begining on the list, Grace will definately still require a transplant, they just feel that she will not be able to wait long enough for one. He sano that is in her heart from her first surgery, she has out grown, and they feel this is the reason she keeps dropping her stats. They think her function has improved enough that she may be able to go through with the surgery. This again would not fix her long term, but would help her wait.
They are having a meeting tomorrow morning at 7:30a.m. to make final decsions, but it looks like the surgery will most likely take place in the next week, the worry is that this surgery has to be done, in a normal child there is not much risk in this surgery. Because of Grace;s heartattack the risk has grown quite large. We are in a tough spot, let our daughter take this risk, or let her be in pain and wait for a heart and risk losing her while waiting.
There could be alot of benfits from this surgery though, it is a long shot, but if she recover well, she may even be able to go home after a month or two and wait at home for a heart.
I will try and update with results from tomorrow before the weekend.
Thank you again for all your support!