Thursday, June 30, 2022

I love water!

Well, Bodie is finally in recovery after what felt like the world's longest cath (I mean, they estimated 3 hours, and it ended up being closer to 6!). He's doing well, but very, very tired. We're so grateful for your prayers to get him (and us!) through today!
When I first saw him, I leaned down and told him "I love, I love, I love you so much and I'm so grateful you're back!" He cleared his throat and groggily replied with "I love water." 

Oh, how I love this kid and his ability to deliver comedic relief when I need it most. 

They ended up doing several interventions today (if you're not a heart mom or in the medical field and your eyes are starting to gloss over, just skip this paragraph!). They stented his Left Pulmonary Artery. During his last cath 6 years ago, they had put in 2 stents in his narrowing LPA. Over the last 6 years as he has grown, those two stents have grown apart. So they put in a larger stent across both of the existing stents. So his LPA is now nice and wide. They also stented his Fontan conduit, which was wide at the bottom, but had narrowed in a couple of places further up. They also coiled one collateral and ballooned a part of his SVC that had slightly narrowed. His Fontan pressures are on the high side at 15, but are exactly where they have been the last 2 caths, so we're happy they haven't climbed at least. It's possible some of the interventions today may help bring those pressures down, but it's not any sort of guaranteed outcome. Additionally, his pressures were a bit mismatched between his aorta and ventricle, which <can> sometimes cause Fontan pressures to go up. So they spent quite a bit of time testing out different pacemaker settings to see if any adjustments would cause the Fontan pressures to change (spoiler alert - none of them did). 

The long and short of it is that all of these interventions for the most part were to be expected. They're all part of the Fontan roadmap many centers are now following, sort of like your 60,000 mile tuneup on your car. We're hopeful that some of these interventions may actually help him have more energy too. For the most part he's felt ok, but then he's used to feeling not quite 100%, so we'd love for this to help him feel even better.

We are so incredibly lucky Bodie is alive in a time where they are learning so much about the downfalls of the Fontan and are proactively monitoring and adjusting things to get these single ventricle hearts (and bodies!) to work with the Fontan anatomy as long as possible.

Bodie is currently having some arythmias they're monitoring and is still in the post-op recovery unit. He should be moved shortly to the step down unit upstairs. Hopefully, he'll just be monitored overnight and we'll be headed home tomorrow. Please pray that happens! 



  1. Oh Amy! I am so happy for you and your family. Bodie is lucky and blessed on all fronts. Continued prayers & love to you all.

  2. Hi Amy! So grateful I got to see you today and that Bodie’s procedure went well! I will pray for a great night and hopefully safe travels home tomorrow. I’m sorry (but not sorry 😉) that I didn’t get to see him today. Please give my love to all!! Sylvia ❤️