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! 


Cath Update #2

We just heard from the cath nurse and Bodie is doing great. They're done with all of the diagnostics and were able to get all the images and measurements they needed. They coiled some collaterals (veins that form to divert blood in response to the Fontan circulation - not unexpected in Fontans, but he hasn't had the issue in the past, so we were hopeful we'd avoid it this time as well) and are currently putting another stent in his left pulmonary artery. Again, not unexpected, but we were hoping to avoid that as well.

Please keep praying for Bodie and the medical team! 


Cath Update #1

We just heard from the cath lab nurse, who says Bodie is doing great. They're still taking pictures and measurements. After that, they'll move onto interventions as needed. So still a ways to go. But we'll take any positive news we can get!

I'll leave you with this pic of Dusk and Bodie at the Funko Pop store last night. 
One of Bodie's favorite places - if you're in LA and you (or you kiddo) love Funko Pops, you have to check this store out. It's SO fun!

Cath is underway

They took Bodie back about a half an hour ago. He didn't seem too nervous, although it is always interesting to watch as his coping mechanisms change over the years (his latest is that he won't make eye contact with anyone when he's here - his eyes jump all over the place like he's looking for a trap door to escape - pretty sure the doctors here all think the kid can't carry on a conversation, which is hilarious since the kid NEVER stops talking at home - ha!). 

But he was ready, and spent most of the time in pre-op talking to me about his plans for Panda Express later today. :-)

Dusk and I both got to spend some time with him, and he got to Facetime with Sierra for a bit. And he was pretty excited they let him play Robolox on his laptop all the way to the cath room door. We're so grateful for modern technology!

Please pray for our sweet boy!

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.