Ok, yesterday was a long day of information overload. We were in bed by 10pm instead of our normal 2am just to give you an idea of our exhaustion. We sat down yesterday with some of the transplant team to discuss our options with Lindsay. Don't be alarmed, we are not quite there yet, but at some point in time because of her heart function and leaky tricuspid valve, we will have to go the transplant route. After a long discussion and many questions asked and answered, Jr and I have decided to place Lindsay on the list before we leave the hospital to take her home. Yes, allot of you have questions, so I hope this explanation helps......
If we take her home in a week or so and then have her evaluated as planned in 2-4 months time, they could potentially tell us that she will not be able to handle the hemi again and will want to put her on the transplant list at that time. Not knowing what her condition will be a few months down the road, it may be too late for her and be too sick, and this way if she hasn't had an offer for a heart, she is then higher on the list and the chances of getting one are much better by that time if we do it now. The only down side to this, and Jr and I promised that we would be mentally ready, is that realistically we could get a call next week. Now that is just a "for instance" but who knows, it could happen. If that were to happen, we cannot turn it down whether we are ready or not. It is a BIG thing to decide to do this but so that all of you understand, she would have eventually needed this anyway. So, no big shocker to us that we had to have the meeting yesterday. We are just having to talk about it sooner than we thought. Her function now was the stick that broke the ice and who's to say that it will ever get better. Dr. Devaney talked to us briefly this afternoon and agreed that we have made the right choice. He was starting to head in that direction for Lindsay anyway. So, that made us feel even better about that. Ok, ask away because I'm sure one of you has a question that I didn't cover....mmmmmm Amanda maybe?? ha ha Please feel free because it may help us ask a question to the docs that we haven't thought of. You never know!
Like I said, allot to digest so hopefully I have explained what I needed to so that you know what we have coming ahead for the princess.
Oh my gosh, almost forgot!!....the princess was extubated today!! That's right, no ventilator!! She looks so good and so we will be able to hold her. I'm thinking tonight. So, I will post photos again when we return from our evening visit.
Keep the prayers flowing. The man above loves us sooo much!!!
Love, Suzie and JR