Wednesday, June 5, 2024

Here we go again...

This was not the post I was expecting to write...but alas, it appears we are here. 

Bodie had regularly scheduled appointments at the Stanford Single Ventricle clinic this week. So we had planned to come up here anyway. But he started showing signs of heart failure suddenly on Monday (exhaustion, low 02 saturations (in the 70s!), stomach pain, etc.), so after lengthy discussions with his teams at both CHLA and Stanford, when we got up here yesterday, we brought him to the ED. He was admitted to the Cardiovascular ICU late last night / early this morning. 

We don't know exactly what precipitated this sudden onset of heart failure symptoms, but we are highly suspicious that it's the result of going up on his anti-arrhythmic med, Flecainide, in April. Anti-arrhythmic meds always have the potential to cause the very arrythmias you're trying to control (or other ones), and in this case, we think that's what happened.  Somewhat odd that the med worked so well at the lower dose, but this is Bodie, so we have to kind of expect the unexpected. 

What we do know is that Bodie has likely been in Ectopic Atrial Tachycardia (EAT) for some time now, and when his body is in prolonged EAT, even at low rates, hemodynamically, his heart and body become very unhappy. It's bit of a chicken and the egg situation - did the the heart failure cause the EAT, or did the EAT cause the heart failure? We're leaning toward the latter, with out current goal to get him out of EAT and let the dust settle, to know exactly what we're dealing with.

All that said, the plan is kind of murky right now. He's inpatient. We don't know how long. We have a couple of plans to get him better, but don't know yet which will work. He's currently on high flow oxygen, which is enough to maintain his sats without any IV meds, which is good. We're starting a new med today that works for some patients with CPVT and EAT. The med makes a tremendous difference for some patients, and does nothing for others. We won't know which camp Bodie will fall into until we start the med. We're praying he falls into the camp where it makes a tremendous difference. If not, the next step will likely be an ablation, which isn't without risk when the patient has compromised function. So, one step at a time.

In the meantime, he's tired. I'm tired. We got all settled and finally went to sleep around 4am. And he's HANGRY. So so mad they won't let him eat and I won't get him food. So he's pretty sassy too. 

Please pray for Bodie. 
1. Pray the EAT stops.
2. Pray we can clearly determine that the EAT caused the heart failure.
3. Pray that his heart recovers quickly. 
4. Pray for his spirits. He's pretty bummed to be here, during his first week of summer. 

Thanks for praying for Bodie!


  1. Prayers for you Bodie from your extended family in Oregon. 🙏

  2. When a child is in pain, or sick or sad or any other gambit of emotions parents are feeling quadruple the emotions. Stay strong and God will guide you through. ✝️❤️