The Scary Part

We're now moving on to what to date has been the scariest part of his journey. Bodie spent the morning really lethargic and decompensating, showing us all that managing him via medicine only wasn't going to be an option anymore.

So, right now, he's being put on ECMO. If you don't know what ECMO is, consider yourself lucky. It's essentially life support that allows the heart and lungs to rest, and comes with potential side effects that are horrific for any parent to imagine. But at this point, with Bodie continuing to decompensate, it's our best bet to keep him in a safe place. He technically wasn't needing to be on ECMO just yet, but the team felt strongly that was where he was headed, so they wanted to do it in a controlled environment, rather than waiting for him to decompensate further, go into cardiac arrest and then try to rush to put him on ECMO.

Plans are constantly changing, but the current plan is to safely get him onto ECMO and stabilize him. Then spend the next couple of days trying to figure out what is going on with his heart (once he's stable, they'll be able to do a cardiac cath or other procedure requiring anesthesia) and simultaneously evaluate him for transplant. Ideally, 1 of 2 things will happen - either the cath or ablation will solve the heart issue and they'll be able to start to preserve his heart function and take him of ecmo that way; or it won't, and they'll move him to a ventricular assist device to bridge him to transplant. 

This is all to say, we need prayers even more than before. ECMO is scary. We're very scared, but leaning into God and His provisions for our son. 

Today, please pray:

1. That Bodie can safely can go onto ECMO.

2. That, while Bodie is on ECMO, all of his organs especially his brain are protected and well profused, and he doesn't have any brain bleeds or clots as a result.

3. That the path forward is made clear quickly, so he doesn't have to spend much time on ECMO.

4. If he needs a transplant, that he's a candidate. 

4. That he comes off of ECMO safely.

Please, please pray for our sweet boy!