We met with the heart failure team this morning and things did not go at all how we hoped and prayed they would go. Bodie's heart function is poor, his BNP is up even higher than it was 2 weeks ago, and some of his labs are troubling. We do not know why this happened, although there is speculation (including a theory that at some point during or after his last surgery he had a clot or embolism go through his coronary artery and cause scarring which caused damage to an isolated part of his heart) - but it is highly unlikely that his heart function will rebound.
At this point, it is about managing him to get him to transplant.
To say today was a punch in the gut was an understatement. Although we always knew Bodie's heart wouldn't last his entire life, we did not anticipate having this discussion already, at 6 years old.
Today the doctor actually said
"I want to manage your expectations. This heart will not last to adulthood."
There were tears all around, especially by Bodie, who shut down and told us afterwards through tears that he was sad because the doctor said he was going to die before he grew up.
We explained that was NOT what she was saying, and that instead she meant the heart he has right now won't make it and that he'll need a new heart. And that NEW heart will let him do everything he wants to do now but can't (like run fast). He liked that part (a lot!).
This is so hard, you guys. So hard. We love this boy so much. And he has defied the odds time and time again. And our prayer is that he will so again this time around. But this news is new and hard to process, for all of us. (We haven't even told Sierra yet, but Dusk will after school today.)
They are scheduling us for a cardiac cath as soon as possible, to see exactly what we are dealing with, whether the heart function is worse (or better?) than it looks on echo, to see how his Fontan pressures look, etc. There is a lot going on, and in order to know how best to treat him, we need to know what we're dealing with. That will also tell us whether we are looking at transplant more urgently or not.
At this point, we need prayer and we need it BIG. Please pray for Bodie's heart function to miraculously improve (since that's what it would take!), and for this cath to happen soon without any complications (this is huge as cathing someone with poor heart function is riskier). Please pray for his body to fight off bugs well, since it's hard for him to battle through viruses with depressed heart function. And pray for peace for all of us. What we thought was a detour appears to be a new destination for us - one we weren't packed or remotely prepared for.
Friends, we need you to please please pray us through this. Because we're not getting through this without a heck of a lot of prayer fortifying us.