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Maverick's Movement

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Born with HLHS, 5 open heart surgeries, pacemaker, and now Maverick’s future depends on a heart transplant.

Maverick was born with Hypoplastic Left Heart Syndrome (HLHS) and began his journey with his first open-heart surgery, the Norwood procedure, at just 4 days old. He continued with the Glenn at 8 months and the Fontan at 2 years, followed by an abdominal pacemaker at age 8 and a complete pacemaker replacement at 18. Now 19, Maverick faces the need for a heart and liver transplant and is searching for a center willing to accept his case, after being deemed too high-risk by two transplant centers. His story is a testament to resilience, hope, and the life-saving impact of organ donation.

10/13/2026

❤️

Maverick had his heart catheterization at Cleveland Clinic yesterday.

They ended up going through his neck this time, which was a little more challenging because of his anatomy. His doctor explained that going through his groin is actually a much easier approach for Mavericks anatomy.

The biggest thing we were waiting on was his Fontan pressures (this is what Mavericks circulation is known as). When comparing yesterday’s results to his catheterization in March, his pressures have remained the same.

For those who aren’t familiar with Fontan circulation, normal pressures for Fontan are generally around 10–15 mmHg, although this can vary from person to person. Maverick’s Fontan pressure was 25 mmHg in March, and his doctors explained that his pressures are still around the same level.

To put that into perspective, his Fontan circulation is operating at a much higher pressure than what is typically desired.

While this isn’t bad news, it doesn’t necessarily mean it’s good news either.

We’re thankful his pressures haven’t worsened, but they’re still significantly elevated. His doctors explained that these pressures aren’t something his body can safely maintain long term.

One of the difficult things about Maverick’s heart condition is that things can remain stable for a while and then deteriorate very quickly. That’s what makes this journey so unpredictable. Stable doesn’t always mean everything is okay.

The plan is to repeat his catheterization in six months March-April, with his weekly blood draws and doctor visits being maintained. Then regardless of those results, Cleveland Clinic plans to move forward with pursuing Status 2 on the heart transplant list, which would give Maverick a higher priority for a new heart, and he would begin living in the hospital.

We’re thankful that yesterday didn’t bring news of worsening pressures, but it’s another reminder of why a transplant is so important and why we can’t stay where we are forever.

For now, we keep moving forward, taking the good where we can find it, and hoping that the right heart comes at the right time. ❤️

10/12/2026

Second Right Heart Cath in 6 months. ❤️

10/06/2026

Mav had his checkup at Cleveland Clinic today. ❤️

Next up is his heart cath on Monday. They’ll be checking the pressures in his heart and Fontan circulation, and those results will help determine what comes next.

Depending on what they find, Maverick could be moved up to Status 2 on the heart transplant list.

It feels like we’ve been living in this world of waiting, testing, and “what’s next” for so long. Monday is another really important step, and we’re hoping for answers that move him closer to getting the heart he needs.

As always, thank you to everyone who continues to check on Mav, pray for him, and support our family through all of this. ❤️ One step at a time.

09/18/2026

This is what clubbing looks like. ❤️

These are Maverick’s hands. Because of his lifelong heart condition, he has developed digital clubbing, where the fingertips become rounded and enlarged and the nails curve more than usual. It’s one of those physical signs of CHD that you may not notice unless you know what you’re looking for.

Yesterday after cardiac rehab, we had another reminder of just how hard his heart is working. His heart rate stayed between 107–115 for FIVE hours and wouldn’t come down, even with rest. Around 2 PM, after laying down for several hours, it finally dropped to 97.

These are the things you don’t see when you look at him.

You don’t see his heart working overtime.
You don’t see how long recovery can take.
And you don’t see the waiting for a new heart.

So here’s a little CHD education for today:

Those rounded fingertips? That’s clubbing.
That persistent elevated heart rate after activity? That’s something we pay attention to.
And that young man attached to them? He’s still fighting every single day while we wait for his new heart. ❤️

09/09/2026

Today, we’re sharing Maverick’s story. ❤️

Maverick is in need of a new heart, and with his fundraiser coming up this weekend on the 12th, we wanted to help get his story in front of as many people as possible.

At Loudhouse Productions, we believe everyone has a story to tell, and we’re here to help tell it.

This is the beginning of something new we’ve been quietly working on. Using what we do to give people a platform, share real stories, and hopefully make a difference.

Please take a few minutes to watch, share, and check out Maverick’s GoFundMe. Even a share can go a long way. ❤️

Watch Maverick's full video HERE: https://www.youtube.com/watch?v=c6-167lforc

09/07/2026

Life with Maverick means our calendar is basically a full-time job. ❤️

Right now, he has three appointments every single week, two in Bellevue and one in Sandusky. And while we are so incredibly grateful for the doctors, nurses, therapists, and everyone who continues to care for him, there are weeks when we simply cannot be at every appointment with him.

That’s where family comes in. ❤️

We are SO thankful for the family members who are willing to drive him, sit with him, take notes, ask questions, and be there for him when we can’t. It truly takes a village, and we are blessed beyond words to have people who show up for Maverick.

One of the biggest challenges we continue to navigate is Maverick’s ARFID (Avoidant/Restrictive Food Intake Disorder) and eating disorder.

Maverick has been in and out of feeding therapy from the time he was 2 years old until he was 15. We tried. We worked on it. We went to therapy. We tried again.

And unfortunately, it just never budged.

ARFID affects so much more than what someone will or won’t eat. For Maverick, foods that were “safe” last week may suddenly not be safe today. Foods he could tolerate can suddenly become impossible. And when you already have a body that is medically complicated and dependent on very carefully balanced medications, nutrition becomes even more important.

Friday was a perfect example of just how much his eating disorder and nutrition can affect everything else.

His blood work came back extremely out of range.

His INR was 5.8 and his PT was 55.5.

For reference, his INR goal is much lower than that.

So what does that actually mean?

INR is basically a number that tells us how long it is taking his blood to clot while he is taking his blood thinner. The higher the INR, the longer it takes to clot, which means his blood is too “thin” and his bleeding risk is higher.

PT is another way of measuring how long it takes the blood to clot. His PT being 55.5 means his blood was taking significantly longer than normal to form a clot.

As soon as that lab alert hit my phone, I knew the doctors would be calling.

Sure enough… two minutes later, Cleveland Clinic was calling.

His cardiologist instructed him to take it easy and do nothing but hang out at home for the weekend. He was also instructed to skip a day of his medication.

Then the pharmacist called with his new dosing instructions for this week.

And now?

He needs labs twice this week, on top of his two appointments in Bellevue.

This is the part of Maverick’s journey that can be hard to explain to people.

His body is extremely sensitive to even small changes. Something that may seem insignificant to someone else a change in what he is able to eat, how much he is eating, or how his nutrition changes from week to week can have a much bigger impact on his medications and his blood levels.

His warfarin dosing has to be carefully adjusted because we are constantly trying to find that very narrow sweet spot where his blood is not clotting too easily, but also isn’t taking too long to clot.

And when his nutrition is unpredictable because of ARFID, keeping that balance can become incredibly difficult.

So while we continue waiting for a heart and hoping that transplant day comes sooner rather than later, we keep doing what we have always done:

One appointment. One lab. One medication adjustment. One day at a time.

And we are incredibly grateful for every person who helps carry Maverick, and us, through it. ❤️

08/24/2026

Today was a big step for Maverick. ❤️

He had his orientation for cardiac rehab, which he’ll begin attending 2–3 days a week. This is something I pushed for after talking with his transplant team about my concerns that he’s already becoming easily fatigued and that we need to do everything we can to help him maintain his strength while he waits for a new heart.

This rehab isn’t about pushing him to his limits. It’s about maintaining muscle mass, preserving strength, and keeping his body as ready as possible for transplant. They’ll be watching him closely, by having him attached to monitors and working within what his heart can safely handle. His first official visit begins this Thursday ❤️

It may seem like a small step, but while we wait, every step matters. 💙

08/17/2026

ONE DECISION

One decision can change everything.

Choosing to become an organ donor could mean the difference between someone’s story ending… or continuing.

For someone waiting for a heart, liver, kidney, lungs, or another lifesaving organ, your decision could give them more time. More memories. More birthdays. More life.

Maverick’s story has shown us just how precious that gift can be. ❤️

One decision.
One donor.
Countless lives changed.

Choose to be an organ donor.
Give the gift of life.

💚 Maverick’s Movement

07/30/2026

Another Cleveland Clinic heart checkup in the books. ❤️

Today’s appointment brought some good news—Maverick’s heart is stable, and we’ll take that win every single time.

The plan moving forward is to continue with his weekly lab work while they keep a close eye on everything. He’s also been scheduled for another heart catheterization in October. A heart cath gives the transplant team the clearest picture of the pressures inside his heart and helps them monitor how things are progressing while we continue this waiting game.

These appointments are a constant reminder that even when things are “stable,” there’s still so much happening behind the scenes. Every lab, every scan, every procedure is another piece of the puzzle as we wait for the call that will change his life.

And because every hospital day deserves a little bit of sweetness… we ended the day the best way we know how—with a well-earned sweet treat. 🍦💙

One appointment down, one step closer, and forever grateful for stable days.

07/21/2026

Today Ricky took Maverick to Cleveland Clinic for his appointment with Dermatology.

When you’re preparing for a heart transplant, every system is evaluated, and that includes your skin. After transplant, the medications that protect a new heart work by suppressing the immune system. It’s a delicate balance: if the immune system is too active, it can reject the new heart. If it’s suppressed too much, the risk of infections and skin cancers increases. That’s why establishing care with dermatology now is so important. They’ll monitor him before transplant and continue routine skin checks for the rest of his life afterward.

It’s amazing how many specialties come together to care for one patient. Every appointment plays a role in giving him the best possible outcome.

We’re also still making weekly trips for his warfarin (Coumadin) blood work. Finding the right dose has been anything but straightforward. One week his INR is too high, then it drops, then it spikes again, then back down. Each result means another medication adjustment and another week of waiting to see where it lands. It’s a constant process of fine-tuning until his levels become more stable.

This transplant journey is made up of so many appointments that people never see, but every one of them matters. We’re grateful for the incredible team at Cleveland Clinic walking this road with us, one step at a time.

Next week, back to Cardiology at CC.

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