Talking transplant

As of Monday, Macsen’s BNP hasn’t really come down much. It was in the 1700s. It hasn’t gone up but it’s not coming down like we hoped and prayed for. We have an appointment in Birmingham in a few weeks and are supposed to meet with the transplant team then as well. 
I am so.... resistant to transplant. It is not a cure and we have seen so many of our heart buddies who survived surgeries and years of living with a heart defect, pass away after getting a transplant. For some it happened within days, some months, some even a year later.
Transplant comes with so many strings - a dead immune system so you don’t fight your new heart but then can’t fight even a common cold. 20 medicines a day including multiple antibiotics and steroids. An almost threefold risk of getting cancer and the eventuality that you will need another heart and possibly multiple organ transplant.
And he’s only 5. If, with meds, we can get him older, and bigger there will be more organs available. They are very scarce. What if his medications just need more time and he will get stronger?
New transplant rules mean that for him to be on the top of the list he has to be living in the hospital. No longer can someone wait at home for the call :(While we were at the hospital this last time we met a little girl who had been living in the hospital for 7 months - waiting for a heart. The cardiologist at Children’s of Alabama warned us we could wait too late to list him - that he had seen kids like Mac suddenly nose dive and it was too late to get all the requirements done for transplant.
Because there are many requirements. He can’t have too many antibodies - something he could have gotten from all the blood transfusions during his surgeries. He has to be 100% caught up on all his vaccines - something we were delaying until he wasn’t so sick but now will have to give him anyway or no transplant team will give him a heart :( And the transplant team will examine our family, our support system, and so many other factors to determine if Macsen deserves a heart. It’s a lot and something I pray we have more time to do.