Friday, July 1, 2022

A different type of Independence

As the rest of Los Angeles appears to be exiting the city for the holiday weekend, we get to join them!!! Bodie was discharged late this afternoon and we are headed home (right after we stop by an awesome Stranger Things watch party Sierra and her best friend have been working on all week!).

We're so grateful to have this cath behind us! We've known it was coming for some time, and it weighed heavy on me. So to have it past us is such a weight lifted off my shoulders! 

We have several friends who Fontanned the same summer as Bodie who are also heading in for their Fontan tune-ups this summer. About that, Bodie says "then I won't tell them it was the worst thing ever!" Hahahahaha Bodie doesn't sugarcoat, that's for sure!

As we're celebrating our newfound freedom with no planned interventions on the near horizon, we're taking a deep breath and enjoying life! Figured it was appropriate to close with a pic of Bodie with one of our favorite nurses, Nikki.
Today Nikki helped us get discharged and on our way (pretty sure we'd still be there if she hadn't stepped in to help). But once upon a time, Nikki helped a new heart mom find her voice and learn to advocate for her very sick son. And he is alive today because of it. For that, I will be forever unspeakably grateful. 

Thank you so much for all your prayers- please keep them coming as Bodie continues recovering over the next few days! We're so grateful for it! 

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.


Tuesday, April 5, 2022

Stealing Bodie's Thunder

Bodie is getting his pacemaker replaced next week, and we're all gearing up for surgery. He's had this pacer since his Fontan surgery, so going on 9 years now, and the battery is D.O.N.E. It should be a relatively straighforward procedure and he should go home the same day, but with these cardiac kids, you just never know what to expect. So, like I said, we're all a litte uneasy and focused on his upcoming surgery.

And then, Dusk's cardiac team at UCLA called this morning and asked what he was doing last Friday between 5 and 6pm, because evidently, something had interfered with his pacemaker and it had just stopped for a few seconds. For a dude that relies 100% on his pacemaker, that's not a good scenario. Their suspicion was lead failure. So his team let us know in no uncertain terms that they wanted him at UCLA immediately, and he was not to drive there himself. 

So, Bodie and I packed up the schoolwork we were working on, Dusk packed a bag to stay the night, we found someone to take care of our 8,000 animals, we picked Sierra up from school and we were on our way. We were up at UCLA by around 2:30 and after interrogating his pacemaker and doing a few other tests, they were able to confirm that the lead is not communicating with his pacemaker. And the malfunctioning lead is the sensing lead, the one that tells his ICD to discharge because some big, bad awful thing is happening. His pacemaker needs to be replaced as soon as possible.

His team admitted him and got him on the schedule tomorrow (Wednesday) afternoon at 1pm to replace his pacemaker.

 Talk about stealing Bodie's thunder.

Apparently, Dusk's pacemaker heard Bodie was getting replaced and jumped in with "oooh!!! Ooohhh! Me first!!!" 

So there you have it. 
Unplanned drive to LA. 
Unplanned hospital admission. 
Unplanned surgery.

But I got to say, I'm so proud of the kids and how they just rolled with it. Not one complaint. Dusk's awesome cardiologist (who actually happens to be a pediatric electrophysiologist who also sees adult patients), upon hearing that CHLA won't let Bodie keep his pacemaker when they remove it next week, gave him a sample pacemaker to take home! 
Bodie was over the moon to get it.

I looked over to see Sierra taking a picture of him holding it and then texting her boyfriend's mom, saying that "It's not super major of a surgery. They're just going in through his chest" 
You know, just another Tuesday for the Bennetts.
Clearly, we've done a better job of normalizing all of this than we realized!

So, to recap, crazy day. 
Dusk is in the hospital. 
Kids and I are staying in a hotel tonight and hope to see Dusk tomorrow morning before his surgery.
And the surgery isn't that big a deal because at least it's not open-heart surgery. 
What can I say? Our bar is a pretty high for a surgery to be considered a big deal. :-)

We covet your prayers for an easy and smooth surgery - and that we're all home tomorrow night, safe and sound!

Thursday, February 17, 2022

Shiny, Happy Birthdays

This brave resilient kiddo turned 12 yesterday.
12 years of hopes and dreams and defying expectations. 
We will never stop being amazed at the miracle that is this kid's life. 
We love him more than he will ever know. 

But here's the thing no one tells you about raising a medically fragile child (or maybe they did and I missed that page in the "How to properly raise a child with a rare lifelong disease so that they don't grow up to be a spoiled brat incapable of adult living if they actually get to grow up" handbook)...
milestones are complicated.

Birthdays are a big deal. 
They're a big deal even with healthy kiddos, and even more so with medically fragile kids. They're a reason to celebrate all of the milestones of the past year. And in the case of a medically fragile kiddo, especially one you never dared to hope to dream would see so many birthdays, it's a big big deal. A million reasons to celebrate, to be sure.

But parenting a medically fragile child is a different sort of experience. It requires a lot of very intentional compartmentalizing. It requires taking the biggest fears and concerns, thanking God for taking them, wrapping them up in a box with a pretty bow and shoving that box verrrrrrry far back on the highest closet shelf. And then it requires pretending that box does not exist. Because if you really lived with those fears and uncertainties on a daily basis, it would be paralyzing. It would rob every day of its enjoyment. So you keep that box tightly closed and locked away and try your best to ignore it and live in the here and now.

But when a birthday (or any milestone, for that matter) comes around, you are forced to bring that box down. Because to fully appreciate the beauty of that birthday, the miracle of it, you have to acknowledge what makes it such a miracle. 

And so you hold your breath and you peak into the box, and you see inside that box the worst of your fears. Because that box is swirling with emotions - the PTSD from all the things that did happen, the survivor's guilt for all of the things that could have happened but for reasons you don't understand thankfully didn't, and anticipatory grief for the things that are still to come. It's just...a lot. And, if you're like me, and you're a Cancer, well, you like to hold onto feelings like they're winning lottery tickets. And you're just one hot mess.

Because there's no way to appreciate him turning 12 years old without remembering sending him into open heart surgery at 5 days old, at 2 months old, at 7 months old, at 3 years old, or at 6 years old, each time uncertain whether he'd come back to us...or without remembering the 10 year old roommate he had as a newborn, who suddenly and unexpectedly lost his battle with CHD...or without remembering conversations with doctors about how he likely wouldn't make it to his next surgery, and if he did, he likely wouldn't be strong enough to survive...or ...or...or...the list goes on and on. 

And so, you often find yourself a bit melancholy leading up to birthdays and your eyes filling with tears every time you see your amazing warrior of a son blowing out birthday candles. Not because you don't love him or you're not excited. Because you do and you are. But because there aren't enough words to describe all of the emotions. It's just too much. There's just no space big enough to hold it all. So it stays in the pretty box...most of the time at least. 

Like I said, it's complicated.

So if you see me teary-eyed at a birthday party, or a milestone, give me some grace. There's a lot of complicated stuff going on. 

But know this - we love this kid. 

He's an incredible, funny and resilient human being. One who is going to move mountains. If he can just get out of his own way. ;-) He's a pretty great kid. When he realizes it too, the world will never be the same.

We love you Bodie. Happy 12th Birthday. Here's to many many MANY more!