Hello!
It's been a hot minute since I've updated everyone with what's going on in Amelia's world.
When I left y'all, we had met with the Dr at CHOW, and discussed transplant. He did a fantastic job, explaining the process to us. We have a more accurate picture of a transplant, which is helpful, because before, the idea of it was pretty terrifying.
I talked to the Dr from CHOW, shortly after he presented Amelia's case to a room full of doctors, and the general consensus from them, was that we should give the Fontan another try. Dr. Kindel explained that although that was what they thought would be best, he didn't necessarily agree. Amelia's cardiologist in Madison felt the same way, she doesn't feel the Fontan is the best option right now.
Yesterday, we met with her cardiologist in Madison, to touch base, and to get on the same page. We love Amelia's cardiologist, who cares about Amelia so much. She feels pretty certain right now, that Fontan is not a good option for her.
Amelia will do the evaluation for a transplant in March, and assuming all the tests come back in favor of transplant, she will be listed. She is going to have a crap ton of blood work done, and in that, we will get to see if she has a lot of antibodies from all the stuff she's been through. She's received a lot of blood product during surgeries and recovery, so that number could be high. From what I understand, if that number is high, it makes her wait on the list a lot longer. There is also the chance that it's too high, and if that's the case, we will revisit the Fontan.
I thought I would feel a lot worse about this, but we are relieved to have a plan. We haven't had any idea of which way this was going to go, for too long. Honestly, its a bit of a bummer as well. The Fontan, given that everything goes well, is a nice, pretty package, compared to transplant. Pick a date, show up, recover, go home, and move on with your life. We would have done it this summer, so Kindergarten would have started without the worry of her stamina declining. With a transplant, we worry about a lot of things, but one is that she will eventually need a lot more assistance than her peers, and we hate the idea of Amelia feeling different than them. BUT, today, I choose to think about the positive thing, which is that we have a path. It is a bumpier, curvier path, but we have it. We also have Amelia, so that's a blessing for sure.
Thanks for reading, friends. We love and appreciate your prayers and support.
