Maverick's Movement

Maverick's Movement Born with HLHS, 5 open heart surgeries, pacemaker, and now Maverick’s future depends on a heart & liver 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 f

or 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.

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. 💙

ONE DECISIONOne decision can change everything.Choosing to become an organ donor could mean the difference between someo...
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.

Today Ricky took Maverick to Cleveland Clinic for his appointment with Dermatology.When you’re preparing for a heart tra...
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.

07/10/2026

For everyone asking about Maverick’s surgery and when it will happen, the hardest part about being on the transplant list is that there is no set date. There is no countdown, no scheduled surgery day, and no way to know when that call will come. You simply keep living your life while always keeping your phone close, knowing that one call could change everything.

The typical transplant patient may wait around 6–12 months after being listed before receiving their transplant, but every journey is different. Wait times depend on many factors, including blood type, donor availability, and medical status.

With Maverick’s specific disease, we have been told that he will only be considered for Status 4 or Status 2. Right now, he is listed as a Status 4. Unlike some other heart conditions where patients may move through different statuses, his pathway is different. His team continues to closely monitor and reassess him to determine when the time is right to move him to Status 2.

The difficult reality of transplant is that you have to be sick enough to need a new heart, but not too sick to wait for one. It’s a balance that families on this journey understand all too well.

For now, we wait. We keep every appointment, follow every medication change, monitor every test and lab, and keep that phone nearby. We are so grateful Maverick is listed, grateful for his incredible medical team, and hopeful that the right heart will come at the right time. ❤️

We finally hit the pause button on hospital life and escaped to Gatlinburg and Pigeon Forge with some of our favorite fr...
07/04/2026

We finally hit the pause button on hospital life and escaped to Gatlinburg and Pigeon Forge with some of our favorite friends.

For one week, life wasn’t centered around appointments, transplant conversations, labs, or medications. It was centered around making memories.

If you know Maverick, then you know WWE isn’t just something he likes… it’s practically a second language. Thanks to his autism, when he finds something he loves, he becomes completely hyper-focused on it. Ask him literally anything about WWE, and he’ll probably know the answer faster than Google. So obviously we had to stop at the Hulk Hogan Shop. Seeing him so excited and hearing him laugh reminded me just how precious these moments are.

We packed a LOT into one trip. We explored Anakeesta, rode the all-glass skyride, rented ATVs, stayed in a cabin with an indoor pool, and somehow managed to see bears… including one that climbed INSIDE our friends’ vehicle! I don’t recommend adding that to your vacation itinerary. 😅

While everyone else tackled trails and climbed every overlook they could find, Maverick and I usually hung back together. We soaked in the scenery, took things at his pace.

Dollywood did throw us a curveball. Even with SPF 50 sunscreen, one of Maverick’s medications caused severe photosensitivity, and he ended up with some painful blisters. We definitely weren’t expecting that, but he’s been such a trooper.

This trip reminded us that even while waiting for a heart transplant, life doesn’t stop. There are still laughs to be had, mountains to admire, friends to make memories with, and moments that fill your heart in ways you can’t explain.

Thank you to everyone who continues to pray for Maverick and cheer him on. We don’t take a single day or a single smile for granted. ❤️

06/27/2026

Back in January, Cleveland informed us that Maverick would need a liver transplant in addition to a heart transplant. Hearing those words felt like a punch to the gut, I remember sitting there feeling blindsided. We were suddenly trying to wrap our minds around the reality of not one transplant, but two.

Since then, we’ve experienced many highs and lows. Two top Hospitals declined him. Then came the news that Cleveland accepted him. Then the third hospital, Duke declined him. We were told we could attempt to see if UCLA would accept him, which we’ve decided to not pursue. We were left with questions, uncertainty, and a lot of conversations trying to understand what this all meant for Maverick’s future.

Recently, Cleveland shared that they believe the best path forward is to proceed with a heart transplant only.

Naturally, this brought even more questions. Why the change? What does this mean for his liver? What happens next?

The reality is that the transplant team wants to give Maverick the best possible chance at survival. Their hope is that by giving his body a healthy heart, his liver will finally have the opportunity to function in a much better environment and begin to heal on its own. They have been honest that things may get worse before they get better after transplant, but that is a bridge we will cross when we come to it.

As parents, we don’t always understand every decision right away, but we trust the team leading his care. They are the experts, and every recommendation is made with Maverick’s best chance at a long and healthy life in mind.

So today, Maverick remains listed for a heart transplant only.

His weekly blood work has been going well, medication adjustments continue, and July will bring more cardiac testing and appointments as we continue this journey one step at a time.

Thank you to everyone who continues to pray, support, encourage, and walk beside us, cheering Maverick on❤️

06/20/2026

🏌️‍♂️🎗️ Raffle Basket Donations Needed! 🎗️🏌️‍♂️

As we prepare for our upcoming Golf Outing Benefit for Maverick this September, we are looking for individuals, families, and local businesses willing to donate items or themed baskets for our raffle fundraiser.

Every raffle basket donated helps us raise funds to support Maverick as he awaits a life-saving heart transplant and spread awareness on the importance of organ donation.

Some basket ideas include:
🧁 Baking & Coffee
🎬 Movie Night
🏈 Sports Fan Favorites
🍂 Fall Favorites
🎁 Gift Cards
🛁 Self-Care & Spa
🎣 Outdoor & Fishing
🍫 Snacks & Treats
🎯 Family Game Night

If you would like to donate a basket, gift card, product, service, or help in any way, please send us a message.

Thank you for supporting Maverick's Movement and helping us make this event a meaningful day for our family and community. ❤️

💙 87% 💙I’ll ask Maverick how he’s feeling, and like most days, he’ll say, “I’m fine.”But as his mom, I see the changes.I...
06/19/2026

💙 87% 💙

I’ll ask Maverick how he’s feeling, and like most days, he’ll say, “I’m fine.”

But as his mom, I see the changes.

I see that his color is never quite right anymore. I see how he slows down after activities that used to be easy. I see the exhaustion, the shortness of breath, and the way his body is working harder just to keep up.

Last night his oxygen saturation was 87% (his new normal). Every time I put the pulse ox on his finger, I catch myself hoping for a number in the 90s.

The monitor simply confirms what I’ve been watching happen over time, the fading color, the slowing pace, the growing fatigue. Changes that are easy for others to miss, but impossible for a mother not to see.

Some days the hardest part isn’t the number on the screen. It’s knowing what that number means.

💙

06/18/2026

Monday Maverick had an appointment in Cleveland with Rheumatology and they ordered several tests.

💙 Why Did Maverick Need a Bone Density Scan? 💙

As part of Maverick’s heart transplant process, doctors ordered a bone density scan (DEXA scan) to check the strength and health of his bones.

Many people are surprised to learn that heart disease, chronic medical conditions, reduced exercise tolerance, nutritional challenges, and certain medications can all affect bone health over time. Because Maverick has lived with complex congenital heart disease his entire life, his transplant team wants to establish a baseline now so they can monitor any changes in the future.

The good news? His results showed that his bone density is within the expected range for his age, with no evidence of osteoporosis and no spinal fractures identified. 🎉

After transplant, bone health becomes even more important. Anti-rejection medications, especially steroids that are often used during and after transplantation, can increase the risk of bone loss. That’s why transplant recipients are typically monitored with regular bone density scans, often yearly, so doctors can identify changes early and protect bone health before problems occur.

This test is one more example of how thorough the transplant process is. The team isn’t just evaluating Maverick’s heart, they’re looking at his entire body to make sure he is as healthy and prepared as possible for transplant and recovery.

Another test complete. Another step forward. 💙

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