Thursday, June 6, 2024

Waiting on the world to change...

Last night, when our dear friend Ramsey stopped by to bring us dinner and sit with us. It was such an amazing bit of normalcy and home and brought Bodie so much happiness!!! 

Bodie is holding steady, which usually is a good thing. 
But in this case, we need a change.
We need to get his EAT under control. 
He's still in EAT, and the medication we tried did little to bring his rates down or get him out of EAT.
He's still oxygen dependent, with sats in the 80s on 6L's. For a kid who runs in the mid 90's on room air, that's A LOT.

What we do know is that his heart is very sick. 
And we're kind of caught between a rock and a hard place.
We <think> the persistent EAT is causing the heart failure. 
But we need to get him out of EAT to be able to determine that. 
And what we've done in the past to get him out of EAT isn't working. 
The team believes an ablation will be our best bet, but doing a cardiac ablation will require anesthesia.
 And anesthesia is risky when his heart is as sick as it is.

I had some very serious discussions with the team yesterday, where we talked about Plans A, B and C, and the likelihood of him coming out on ECMO if something goes wrong during the procedure. To which I asked the obvious question "HOW do we get from a kid who is only needing supplemental oxygen and nothing else to talking about ECMO? That's a huge disconnect for me." Apparently, it's all in the sedation. It's dangerous to put a kid with compromised heart function under sedation, so we have to plan for everything. Processing everything, I'm so grateful LPCH is as proactive as they are in their care, and that they're thinking through all possibilities so that they're as prepared as possible. But it was still jarring to hear it. 

That said, we're walking the fine line of wanting to see if we can medically manage him to get his heart a little happier before sedating him, while simultaneously running the risk of waiting too long and his function getting worse, making sedation even riskier. And no one has a crystal ball to know which side of that line is going to be safer for Bodie.

So we let the doctors (who are far more educated than Dusk and I) put their minds together to see what solution they can come up with. They are meeting today, and including his team from CHLA in those discussions. 

And I just have to give a huge shout out to Bodie's Electrophysiologist at CHLA, who is brilliant and kind and cares so much about Bodie. He was fielding calls from the LPCH team while on his way into his own son's graduation. I am so grateful he's involved in the discussions, because he's known Bodie from the beginning and knows him better than anyone. To say my comfort level is increased significantly knowing he's being consulted would be an understatement. And I'm incredibly grateful that LPCH is so collaborative that they're bringing him into the discussions!

We're so grateful to be at a cutting edge hospital that sets the standard of care for kids like Bodie. (Let's hope our insurance company feels the same way!)

This is all to say, the plan isn't finalized yet. We know they're doing a CT of his heart, abdomen, lungs and access points at 2pm today. They would prefer to hold off on the ablation for a bit if they can, simply due to the risk of sedation. In the meantime, they've restarted Amiodarone, a very heavy antiarrhythmic he was on for a couple of years as a toddler. It actually didn't help him back then, but we're hoping that since this EAT is presenting differently, it might help this time around. But it also comes with the potential for very heavy side effects. He didn't have any of the side effects before, so we're praying he won't this time either.

So where are we at? 

Lots of it.
And we know you all are really good at that - so please help us!
We've been here before, where his function is suddenly low and they don't know why, only that they don't think it'll get better. But it did before, and I know it can again. 

So please pray specifically: 

1. That the Amiodarone gets Bodie out of EAT.

2. That Bodie's function begins to improve, so that we don't need to do a cath or ablation, or at the very least so that we are bought some time to do either of those, time for his body and heart to heal.

3. That Bodie's symptoms improve. He's very up and down, but generally doesn't feel great.

4. That Bodie does not feel any negative side effects from the Amiodarone. He's already feeling flushed (and it's only been going a couple of hours), but we can handle that. What we need is the rest of his organs to be protected from the effects of the Amiodarone.

5. For Bodie's mental health. Bodie hasn't been inpatient in quite awhile, and that's such a double edged sword. When hospital admits aren't the norm, they're very jarring, and you feel the profound difference between them and "normal life." Bodie is incredibly resilient and he'll adapt and get into it. But I definitely see moments that break my heart, where he asks when he gets to go home, and how long he has to stay. Just pray that he continues to be resilient and his typical silly, sarcastic self. 

6. For Amy's mental health. I generally consider myself a flexible person and I'm good at change - just not right when it happens. I have a really hard time being thrown into things, and need the time to process and be scared and sad. And then I put my big girls panties on and suit up to be strong for Bodie and to have all the hard conversations. But it's easier said than done and I'm not quite there yet. So pray for patience for me, that I remember to lean into God and His plans. I know He's been in charge the entire time and I know He has plans here. It's just sometimes hard to remember that in the thick of the scary places.

7. For Dusk and Sierra to feel comforted. It's so hard being far away when something critical is happening to a family member. We've talked about them coming up, but we don't know yet how long this stay will be. So in the meantime, pray for peace and comfort for the two of them. 

We will continue to update as we know more. 

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