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!
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Kirk and Lindsay, you guys and Grace are in our prayers. If there is anything our church can do for you guys please let us know.
ReplyDeleteBrad - Crescent Beach Baptist Church
We are far away but I am keeping up with your posts and havent stopped praying for that dear ANGEL! We love you guys and if you need anything, please just give us a call. My Aunt has a friend at the same hospital you are at. I will have to ask her for their name again, but their son was born about a month ago and he too is now on the waiting list for a heart. The father is a police officer in Jacksonville and my Aunt Vanessa told them about you guys. Hopefully you meet and can help to support each other since you are both going through the same type of situation. Again, we love you guys and are always thinking of you! XOOX
ReplyDeletePs. Sorry, I was writing from Pauls account above, again, Thoughts and prayers are going your way. Amber & Paul Edinger
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