Samuel the Cardiac Warrior

Samuel the Cardiac Warrior Samuel was born on August 18, 2017 in Tifton, Georgia to Ethan and Kristen Leverett. Samuel had his first open-heart surgery at just 6 days old.

At birth, he had several heart defects that needed to be addressed, but were unknown to us as parents and to the doctors. Samuel was transferred to Macon where the doctors found out the exact heart defects that he had. He had TAPVR (Total Anomalous Pulmonary Venous Return) and Tetralogy of Fallot. After being sent to Atlanta at just 3 days old, we knew he had to have surgery. Since then, life has been a whirlwind and we want to be able to share our story with the world!

05/31/2026

A few weeks back we were able to go to the Vidalia festival and watch the blue Angels in action. Of course we had to stop so Samuel could see the helicopters fly away. He might be just a little obsessed with them.

Hi everyone!! We hope everybody is having an amazing 2026 so far. Things have been very crazy around here between appoin...
02/19/2026

Hi everyone!!

We hope everybody is having an amazing 2026 so far. Things have been very crazy around here between appointments and getting Samuel ready for a very special trip! We’ve kept pretty quiet while everything was in process, just not knowing whether anything would happen in the timeframe we wanted it to.

Samuel is officially leaving for his Make-A-Wish trip on Sunday!!! We are so excited to get to share this experience with him. Of course, we requested Disney! Because if you know Samuel, you know he loves all things Cars, Mickey Mouse, and Stitch! We are also going to make time to go to one of Daddy’s favorite movie areas, Harry Potter World at Universal! And of course, Disney is my favorite. This will be Samuel and Ethan’s first time at any of the parks and I’m so excited to share this experience with them.

Be on the lookout for all of fun and pictures we expect to be posting! We want to thank everybody for all of the love and support you’ve sent us and we can’t wait to share his magical trip with everyone.

🎂💙 Happy Early Birthday, Samuel! 💙🎂 We start the celebration week today! This past year has been full of laughter, tears...
08/17/2025

🎂💙 Happy Early Birthday, Samuel! 💙🎂

We start the celebration week today!

This past year has been full of laughter, tears, and everything in between. Through it all, Samuel has faced every challenge with the biggest heart and the brightest smile. 💪❤️

As he gets ready for a heart cath, we’re skipping the big birthday party this year. Instead, we’re asking friends and family to help us celebrate him with love, prayers, and support. If you’d like to send a gift, we’re using CashApp: $heartwarriorfamily.

Drop your birthday wishes below—we’ll be reading them all to him today. Let’s remind Samuel just how loved he truly is! 🥳💌

We’ve been home 12 days!! 12 days of trying to find our new normal. Samuel has been loving getting to be back in his nor...
06/11/2025

We’ve been home 12 days!! 12 days of trying to find our new normal. Samuel has been loving getting to be back in his normal environment. Nights have been rough as Samuel adjusts to his bipap and to finding his sleep routine again. He seems to have forgotten when normal people sleep.

Samuel went to his first PT appointment today. They said it could take him a few more weeks before we see him walking on his own again. He had OT tomorrow, so we shall see what they say.

We are waiting on his portable oxygen concentrator currently, so that we’ll be able to move around more freely for more than an hour or two at a time.

We want to take the time to thank everyone who prayed for Samuel over the last couple of months. Things were crazy and we didn’t have time to respond to everyone.

Some have asked about shirts recently. Samuel shirts are still available to be purchased through the link here:
https://heartmommadesigns.com/products/samuel-t-shirts

Hey everyone. We have some news. We are home!! We escaped Friday afternoon coming home with a couple of new things. We a...
06/02/2025

Hey everyone. We have some news. We are home!! We escaped Friday afternoon coming home with a couple of new things. We are back on oxygen full time, but only 1-2 liters depending on how much he’s moving or playing. He also has to sleep with a bipap machine. Our sleep study showed that he has central sleep apnea( the brain isn’t telling his lungs to take a breath while he’s sleeping) and obstructive sleep apnea. It’s been a learning curve at home the past two nights, but he’s sleeping at home much better than he was at the hospital. The first night he slept almost 10 hours! I think we all needed that. We were able to get his meds and treatments spaced accordingly so we don’t have to wake him in the middle of the night. Daddy is going to spend a few more days at home so we can get a little more acclimated to our new normal, but from what he’s shown us he can do over the last 7 weeks, we’re going to rock it!! Thank you to everyone who has helped us in any way that they could’ve these last couple of months. We wouldn’t have been able to make it without y’all. We love each and everyone of y’all!

Hey everyone. The last you heard from us was Samuel’s right pupil was blown, and his left pupil was very small. We done ...
05/23/2025

Hey everyone. The last you heard from us was Samuel’s right pupil was blown, and his left pupil was very small. We done some imaging and an eeg test (basically checks his brain for seizure activity). There have been no brain bleeds, clots, aneurysms, or seizure activity to be found. They can’t find any reason as to why it happened, and it hasn’t happened again thankfully. Samuel has been rocking it this week though. We’re so happy for all of the improvements he’s been having. We’re waiting on his sleep study results to come back if we’re going to have to have respiratory support while we’re sleeping. If all goes well, we will be coming home within the next two weeks!!!

SHORT UPDATE:Samuel got up this morning and was acting semi like himself. We put him on the couch with us and he sat aro...
05/17/2025

SHORT UPDATE:

Samuel got up this morning and was acting semi like himself. We put him on the couch with us and he sat around for about an hour playing with his tablet. As the hour wore on, he got distracted, so we put him back in bed. This is where things started going downhill.

Samuel started to get very tachycardic and his blood pressure increased. He looked awful. He was shaking, looking very scared and kind of out of it at the same time. We gave him some Tylenol and said to give him a few minutes to see if that helped. I sat down for a minute or two and then got on the floor beside the bed. Looking at his face, his eyes were kind of glassy and his pupils were uneven. Very uneven! There were many concerns, but one that came to our mind was a brain bleed.

At this time….. There are no new brain bleeds (he’s had some previously). It may have been seizure activity, so we are doing a 1 hour EEG and will go from there. He’s already on seizure medication normally, so this seems odd to us, but we will see how the rest of the day progresses.

05/17/2025

Everyone say a quick prayer. We aren’t sure what is happening right now, but Samuel is going down for a CT.

05/15/2025

Hey everyone. The past few days have been a bit of a whirlwind. We have weaned him down to high flow oxygen during the day, and had him weaned down to c-pap, but last night the little punk decided to drop to 80% o2 while on his mask, so tonight we will be going back to the bi-pap settings with the mask that will force his lungs open and keep his o2 saturations up.

On Tuesday we started his medication back that helps with his temperament from his autism. With that med and his new blood pressure medication, his blood pressure tanked. He had to be put back on epi for about 6 hours to get it back under control, but now we’re fighting his pressure being too high. We’re going to go back into his bp med, but at a much lower dose.

Samuel’s CO2 levels have been slowly trending back up over the last week. His team is thinking that it’s partially because of them with keeping him so dry with diuretics, and partially with just how bad his lungs are unfortunately. They have slowed down on his diuretics, and went up just a little on the free water that he gets. His heart rate is also pretty high right now, but they’re also thinking that it is most likely from him being dry. We have to find a happy balance with his fluids. Too dry and his heart rate goes up, CO2 levels rise, and it throws his electrolytes off. Too low, and his lungs start holding fluids again.

Yesterday we were finally able to leave the room, and samuel was able to feel the sun for the first time in over a month!! After that went up the the rehab gym where we practiced standing up again, and the strength this little boy has, has us in absolute awe! Everyone we talk to tells us that he shouldn’t have as much strength that he does after coming off of being so sick and on Ecmo just a few short weeks ago. We’re all so proud of him for the progress he’s made. We’ll still be here a while. Mama has to go home today to make his food, and gets to love on our pups. I’ve uploaded a video of him getting to love on mama while he’s standing during PT yesterday.

Hey y’all. Mama here tonight. The last few days have been a whirlwind. Samuel was extubated Monday afternoon. Things wer...
05/09/2025

Hey y’all. Mama here tonight.

The last few days have been a whirlwind. Samuel was extubated Monday afternoon. Things were great for about 24 hours and then they went downhill again. He started coughing and desatting again. There was talk of him getting put back on a breathing tube, but we have managed to keep that from happening by putting him back on the bipap mask.

I went home on Monday, after he had settled from extubation. I had lots of work hanging over my head that I couldn’t let continue to sit and I needed a break. Getting to spend time with our dogs was wonderful. They have definitely been feeling the strain of us being gone, even though their Aunt Sam has been giving them the best love daily.

Tuesday, after I got back, we had a care conference with some of Samuel’s team. We discussed that Samuel’s lungs are just not healing the way we want them to. The discussion of attempting a heart cath is still on the table, but his lungs are still extremely sick. The team is concerned that opening his veins back up will cause further damage to the lungs. We are in a very bad place where if we don’t do something, he may not get better, but if we do cath, he could still have complications and not do well. Surgery is currently off the table, due to how bad his lungs are.

On top of the lung issues, Samuel is also still having some heart rhythm and rate issues, along with blood pressure issues. During the day, his BP skyrockets, but at night, it’s way too low. His rhythm issues are all over the place. We have added and changed out some medications to help with that for the moment. His RV function is moderate/severely diminisheded and now his LV function is low/moderately diminished. They had him on Epi to help, but took him off today. Not sure what the plan is there.

Overall…. Samuel is still critically stable. He is making very VERY minor progress. Us, as his parents, are critically unstable. Every beep, alarm, noise has us on edge. We are continuously waiting for the next shoe to hit the fan. We are not sure what the next steps will be.

Samuel got to play music with Ms. Hannah before he was intubated last week.

Address

Vidalia, GA
30474-30475

Telephone

(229)589-0059

Website

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