Wednesday, June 29, 2022

Not Our First Rodeo

This is apparently the year of tune-ups for our guys. After my last blogpost, both Bodie's and Dusk's pacemaker replacements went great, thankfully! We jumped back into the hustle and bustle of Spring Break and finishing the school year strong for both kiddos. Then we spent a glorious eight days basking the Florida sun, relaxing and enjoying my parent's 55th wedding anniversary.
And now we find ourselves yet again on the eve of a surgical procedure. Bodie has a cardiac catheterization and liver biopsy scheduled tomorrow morning at CHLA. 

This makes Bodie's 6th catheterization (and first liver biopsy), for the record. Definitely not our first time at the rodeo. But our first time in quite a while, to be sure.

This <should> be just a standard Fontan follow-up. Bodie's Fontan surgery (his last open heart surgery) was in August of 2013, so we're almost 9 years out from that. And his last cardiac catheterization was in December of 2016, when he had rapidly spiraled into heart failure. So it's been 6 years since his last cath. 

It's time.

It's time to take a look at what's going on inside that amazing ticker of his. 

From the outside, Bodie looks good. Really good. 
He just finished the school year at a very academically challenging school with almost straight A's (that darn math gets him every time!). He's still doing weekly horseback riding lessons and tried both soccer and volleyball this past year. He even went parasailing with Sierra and I in Florida and loved it!  

He's enjoying life with a great group of friends and we're so grateful for that. 

But as always, with these cardiac kids, the outside can be deceiving. And there are lots of known issues with the Fontan circulation as these kids grow, particularly with the liver. The issues can't necessarily be avoided, but the sooner you know they're cropping up, the sooner you can proactively add new medications, make adjustments to current ones, etc. to try to help his heart and other organs not fight the circulation so much. 

The new recommendation is for a cardiac catheterization with a liver biopsy starting at 10 years post-Fontan. We're close enough to that 10 year mark, and we haven't seen how things really look since he first went into heart failure. So both his teams at CHLA and Stanford have decided it's time for that cath. 

So tomorrow is the day. 

When we can, we try to make these surgical trips as fun as possible, so we spent today at his beloved Natural History Museum. He and I had so much fun visiting our favorite exhibits!
Tonight, we're hitting the pool and then putting this dude to bed. 

Please pray for our little dude. 
Pray for steady surgical hands. 
Pray for Bodie's body and his heart. 
Pray for no complications (the list of potential risks and complications are endless and would keep any sane person up tossing and turning every night). 
Pray that he doesn't have any arythmias during the procedure. 
Pray that his liver does ok with the biopsy and it doesn't show anything too concerning. 
Pray that no major interventions are needed (we do know that there is a decent likelihood that they'll have to do some stenting, both in his Left Pulmonary Artery and his Fontan conduit, both of which may have narrowed as he has grown - but our hope is that the interventions will be less than expected). 
Pray for protection over his brain and his body while he's under anesthesia. 
Pray for a smooth recovery.
Pray that if he does have to be admitted, it won't be for long and that we'll be home soon.

And please pray for PEACE, for all of us - for Bodie, who has to undergo the procedure, for Dusk and I, who have to wait on pins and needles for him to come back to us, and for Sierra, who is still back home worrying.

Please just pray for all of us tomorrow. 

I'll update tomorrow throughout the day.


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