Samuel the Cardiac Warrior

11/06/2025

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

02/06/2025

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!

23/05/2025

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!!!

17/05/2025

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.

17/05/2025

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

15/05/2025

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.

09/05/2025

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.

08/05/2025

Hey everyone, I’m sorry we haven’t given an update in the last couple of days. I will give one tonight.

04/05/2025

Hey everyone. Dada today. Friday night/ Saturday morning went as well as it could have. No issues after being reintubated. I didn’t get any sleep as I was too stressed out again. Feeling the hopelessness of not knowing what’s going to happen to your child from minute to minute is just way too much to think about. I fell asleep around 8 yesterday morning, and about an hour later they started rounding on Samuel. As we stepped out to listen, Samuel’s alarms started going off. He went into v-tach. His heart rate was all over the place. The highest I saw it hit was 223. They started him on new meds to try and get his heart rate back into the right rhythm, but nothing was working. They eventually had to put the AED on him and shock him. They only did it once, and his heart rate went back into sinus (normal heart rhythm). They’re going to keep him on the new heart medicines for now, and may be on one of them for possibly months. What the team said is that Samuel’s heart did that for possibly one of two reasons, or a combination of the two.
1. His pulmonary veins are causing his heart to work overtime, and will need a heart cath. to get it back under control.
2. His body is still so tired from everything that has happened over the last month.
Samuel did good last night with no hiccups. His CO2 levels are actually a little too low, so they’re having to wean his support even more. His O2 saturations are between 95-98 with 40% oxygen which is wonderful. He’s been initiating every single breath on the vent. Even while intubated, his coughs look stronger. He’s not fully sedated, so he wakes up and looks around at us, picks his hand up, and moves his legs. It’s a very good thing to still see so much movement from him. The team is saying they may possibly extubate Samuel tomorrow depending on how he looks. Thank you everyone for all of the support and love you’ve all shown us. It’s very easy to lose hope while up here. We know our little warrior is strong, and more stubborn than anyone else I know. I have to hope and pray that he makes it through this and we get to take him home.

03/05/2025

30/04/2025

Hi yall. Mama here tonight. These last few days have been EXHAUSTING. Samuel is not making any real progress with his oxygen settings. While yes, he’s off the vent, he’s on a cannula that is only a minor inconvenience away from a vent. He still isn’t sleeping. When I say hes not sleeping, I mean hes awake 22 out of the 24 hours in a day. The team has tried just about every single option to get him to sleep, outside of knocking him out with a frying pan (Rapunzel jokes). He is extremely weak and still cannot do much in vocalizations. He barely moves his hands and feet.

We have no clue what is next at this point. The team doesn’t want to send him to cath lab because of his lungs and how sick he was/ still is, but his lungs are not healing due to needing a cath.

We are at an absolute loss. We have both expressed our frustration and anger with the situation, but nothing seems to be getting through. What we see now is almost worse than what we came in with. We feel like we are slowly losing him day by day, which (in my opinion) is so much harder than where we were 3 weeks ago.

Please understand that if you text us or send us messages, we are not ignoring you. Honestly, the likelihood is you caught us asleep between Samuel’s crying moments and when we are awake, we’re trying to hold ourselves together. This road has been awful and we are struggling with what answers are the right ones.

Thank you for continuing to follow Samuel’s story.