Everest’s Heart Transplant Ongoing Medical Treatme

Everest Story I will post more of his story from the beginning in another update 3-22-2020 This is not the update I ever expected or wanted to write. As y’all know yesterday Everest started having some new unexplained irregular heart rhythm episodes. They did several EKG’s and testing to see what’s causing them. Last night while I was asleep he had several more that were different than the others and lasted longer. So today his Doctor came in and told me she has some heavy news but she needed to prepare me. Of course I was here alone when she came in. Everest’s episodes led to showing them that the muscles in his top chambers are very weak, the can’t squeeze and relax on their own without this medicine he’s on. They had talking about going ahead with his Norwood surgery tomorrow but she said it’s lucky he started having these episodes because there’s no way he would have made it through the surgery. The bypass would have been too much and his single ventricle would have been too weak to sustain him and we would have lost our baby tomorrow. With this comes the realization that Everest’s heart is just too weak to repair or make it through a heart reconstruction surgery at all. She said there’s nothing they can do to fix his heart, and that we would need to start working on getting on the transplant list. Most people thing a transplant is the perfect answer and that you get a new heart and everything is wonderful after. That’s not at all true. First there’s a series of testing they have to do to see if he’s even a good candidate. Then they have to figure out what blood types his body can accept a donor heart from. Then they present his case to the board of transplant and they determine where on the list he is in priority. Then you wait and pray to god he gets a match before it’s too late. Everest can be off the ventilator for now but she said he will decline again, we just don’t know when and then she would intubated him again. Once he’s intubated again, he won’t come off. And I don’t even know how long he can stay on it before he has to come off. I don’t know that he will even make it long enough to get a transplant. So she said the best thing we can do now is just pray and be here every moment we can and hold him as long as we can. Because we don’t know how much longer we will be able to hold him. Once he’s intubated, he won’t be able to be held anymore. She said at least with a transplant he would have a second chance, whereas if they did the surgery he absolutely wouldn’t have made it through. She said she had to prepare us for the worst because there’s no garuntee he will make it to a transplant. And even then, there’s a chance his body will reject it. The heart may be a perfect match, and he could take all the anti-rejection medications and there’s no guarantee that his body won’t start rejecting it a year down the road. And then even if his body doesn’t reject it, he will be on anti-rejection medicines the rest of his life, he will never be able to do anything that requires a lot of activity, he will never be able to go out in large crowds or gatherings because the risks of him even getting a cold can be deadly quick. I’m not going to say I’m okay because I am not. Nothing can prepare you for not knowing if your baby is going to make it. And nothing can make you understand how it feels until you’re the one going through it. It feels like I’m living in hell and I truly don’t know how I’ll get through it. But I know I will either way. We will be here everyday spending all the time we can with him until he gets his heart or god calls him back to heaven. Please please pray for our faith, for our nerves, and most importantly for our baby to get a second chance at his life. This is all of the info I have so far, the team is meeting about him in the morning and they’ll be talking with other top surgeons via conference call to all make decisions for him.


  • Mindy Maucelli
    • $20 
    • 4 yrs


Starlynn Stacey
Hot Springs, AR

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