So. Where to start. Joshua was moved back to the floor last Wednesday. :) We are in Room 4025 now. One door down from the other space. This room is ok. It is a smaller but it does the trick. I don't think I would complain much if the shower was bigger!!
It has been a pretty quiet week. Joshua was in a little funk for a few days. But was much better come Saturday.
I talked to Dr Law today and was told that the transplant is a go and we can get him listed. I wish that it didn't have to be such a complicated case. He has some good things going for him. He is healthy and big. Being bigger really has an advantage as far as getting hearts goes. He is also post Glen which is good and most certainly in his favor. He has some issues that are certainly not going to work in his favor. Pretty scary scenarios but the fact is he is not going to live without it. He may or may not live with it but at least there are odds. This is most certainly a time for prayers!! He is sensitized. His percentage is over 90%. That means that his body is going to aggressively attack a heart from over 90% of the population. They are going to be talking to experts to see what can be done to help with decreasing the chance of rejection. We would LOVE to see him have the opportunity to have a "negative" heart. The chances are super slim so we will probably accept a "positive" heart and do what we can to get Joshua's body to not attack. They have done this with success but there is no real data one way or the other. He is also at a higher risk for rejection later on because of these antibodies. He is also going to be higher risk because of his double Glens. It will make for a very tricky and complicated surgery. One of the fears is that he will have limited blood flow and would have to have stints placed. There is again high risk because they will be located at suture sites. The risk is that while ballooning to create better blood flow and reduce pressures, he could bleed out. We would certainly hope that none of things are issues but we all need to remember that this transplant is in no way a fix all and comes with high stakes.
Dr Law also talked about replacing his PICC line with a Broviac Line. This is a more permanent line. There is data to support that this type of line carries less risk of infection.
So....what does all this mean? Soon, we will probably see him go to IR for the new line placement in the near future. He will finish up the catch up immunizations and the Doctors will talk to the experts to see what the plan is for the immuno-suppression. The Transplant Coordinator will be in to talk to me and get my consent for the transplant.
The most shocking news to me today was the fact that Dr Law didn't feel that we would have him listed for as long as I had decided he would be. :) (Not that we have any pull in this department.) He just said to get ready and get mentally prepared....this could all happen very quickly. Going home in the next few months may be a reality.
I told him I will be patient and I will be here as long as Joshua needs to be. I don't care when I get home as long as Joshua is with me.
Blessings,
Leah
*** so after such a "heavy" post thought you should have some happy thoughts to take away. These were taken this afternoon. He is getting SO strong.
