TRNT1 Dad

11/29/2025

Jimmy Update

Just got off the phone with Jimmy’s team at Riley, so here’s the rundown of where things stand today.

Breathing:
They said his respiratory situation looks better today. His oxygen and PEEP were able to be lowered a little, and he’s still holding great numbers. His chest X-ray looks improved too. They did a chest treatment that apparently makes the airway vibrate, and the doctor joked that he was squeaking like Mickey Mouse — so at least he tolerated it well. Secretions are still thick, but not as overwhelming as before.

Neurology & Sedation:
They told us Jimmy is more awake today, but very delirious. Lots of random movement and confusion — which they said is normal coming off sedation. He’s officially off all sedation drips now. They’re starting him on Seroquel to help with the delirium, so they don’t have to give more narcotics or benzos. Seizure meds are back through the G-tube, not IV. They’re checking an ammonia level because his liver numbers look irritated.

Heart:
He’s now over 24 hours off epinephrine, and they’re lowering his stress-dose steroids again today. His blood pressure is doing what it should. They mentioned he still looks pale and mottled, but his lactate is normal — that means his body is still getting the oxygen it needs.

Fluids:
They said his swelling is noticeably better today, especially in his face. They pulled a lot of fluid the past couple of days, so today they’re planning for more of an “even” day instead of trying to take more off. They said he’s peeing well. Feeds are still barely running at 3 mL/hr. Bowel sounds are active, he’s having movements, and they’re restarting his gas drops. They’re doing an abdominal X-ray because he has some gas in his stomach but his belly is soft.

Liver:
His liver labs didn’t look great, so they’re doing a right upper quadrant ultrasound just to check blood flow and make sure nothing is blocked.

The biggest news from the call:
They finally found a reason for his platelets dropping — he has clots in both femoral veins.
Not fully blocked, but definitely there. Likely from the femoral lines he had earlier in the stay.

This sort of creates a cycle:
• Clots chew up platelets
• But to treat the clots, you have to thin the blood
• And thinning the blood is risky when platelets are low

But the team says it’s safe to start heparin now because he’s waking up more and they can spot changes quickly. They’re starting low and slowly increasing only if he tolerates it.

The good news is that this explains why his platelets haven’t bounced back. And because his white cells and hemoglobin are trending upward, hematology is now less worried about bone marrow failure. We might be able to avoid the bone marrow biopsy if he keeps moving in this direction.

They’re also raising the thresholds for when they transfuse — meaning they’re not going to jump straight to transfusions unless absolutely needed. That’s actually the same strategy that worked for him back in 2024 when he had his last big platelet crash.

They did say to watch for any mouth bleeding — that was a problem last time — but so far nothing concerning.

They also mentioned his selenium level was low, which can affect inflammation, so that’s something they’re keeping an eye on.

⸻

Overall from the phone call:
• Breathing: getting better
• Heart: stable
• Brain: delirious but expected
• Fluid: looking more like himself
• Liver: checking with ultrasound
• Clots: found the reason for the platelet problem
• Bone marrow: early signs of improvement

Not an easy call to hear, but honestly, a day with more good steps than bad ones.

— Dad

11/28/2025

💙 Jimmy Update

Wanted to give everyone an update after our call today with Jimmy’s team at Riley.

Jimmy’s blood counts have dropped pretty low — lower than they’ve ever been. His white cells, hemoglobin, and platelets are all down, and the doctors aren’t sure yet why it’s taking him so long to bounce back this time. They told us this can happen with TRNT1 kids during big flares or infections, but the numbers are still concerning.

He’s had platelet transfusions, but they didn’t raise his counts like they normally do. So we’re watching that closely. They’re also going to ultrasound his arms and legs to check for blood clots, since he’s had clot issues in the past when his platelets get low.

Right now the plan is to give him the weekend and see if his bone marrow starts recovering. If we don’t see improvement by Monday, they’ll likely do a bone marrow biopsy to figure out what’s going on. It’s a small procedure compared to everything he’s already been through, but still — never easy to hear as a parent.

We also asked about a rash on his cheek and some swollen lymph nodes. Thankfully, those don’t look like anything dangerous. Just more things we’re watching while his body tries to heal.

So that’s where we’re at. A lot of waiting, a lot of monitoring, and a lot of praying. I’m trying to stay hopeful while also being real about what we’re facing.

Thank you to everyone who keeps praying for Jimmy, checking in, and supporting us. It really does help carry us through days like this.

—Dad 💙🙏

11/25/2025

A more thorough update regarding Jimmy. (From Kimberly Hand)

He started “flaring” yesterday .. we originally thought it was another inflammation flare like he has been having.
BUT
Today we learned he has a true blood infection. He had a crack in his PICC line Saturday which likely caused this. He’s on three BP medications, and his BPs are still low … his fingers on his left hand are a little dusty already 😭

Please pray that his BPs start to increase so we can come off of these medications to save his fingers and toes.

His heart function is also worse right now.
We also had to do a IJ in the left side of his neck, which was a really hard decision bc his right side is already unusable from previous IJs. It’s super scary to potentially damage the left side as well. It can affect blood flow from the brain.

I don’t know what else to say except that we just need prayers. Nathan does especially too bc today is his birthday and his stress is just through the roof.

Me, I just feel numb. Stuck in just doing the next right thing and praying God & Jimmy figure this out again.

11/25/2025

Well, we’ve had 3 doses of the Enbrel shots and we were praying that it would react quickly enough for us to avoid another flare. It didn’t.

Right on que day 15 he started a fever, and had his heart rate go up. That was yesterday. Now today his fever and heart rate got a little better but his blood pressure has tanked and tanked hard.

We had one draw that was lower than we’ve ever seen. They are working on trying to get more access which every time Jimmy gets sick is harder and harder to do. They need to give blood, monitor blood pressure better, and so many other things.

Kimberly Hand is heading down there today, I’m devastated that I can’t go but after already being gone for 4 days and Thanksgiving around the corner there’s too much that needs done.

Please pray for him to make it through this flare or possible sickness so that we can try another blocker on him to see if we can get to him before he gets hit again. 😭

11/14/2025

Thank you to for this awesome thing you do! If you want a chance to win your thanksgiving turkey then be sure to check this out :)

11/12/2025

Jimmy Update 💙

Today we had a long and honest conversation with Dr. Friedman. Most of it centered around the unknowns with Jimmy — how every choice could help him, but could also hurt him in the long run. He talked about “keys” — how we once found the key that worked and helped Jimmy stay home for nearly 300 days. Now we’re trying to figure out if that same key has changed… or if, hardest of all, there might not be a key right now.

Dr. Friedman agrees that trying Enbrel may be a worthy risk, because what we’re doing right now just isn’t working. He also strongly feels that a bone marrow transplant would not be in Jimmy’s best interest.

Jimmy was switched to a stronger ventilator (the Servo) to give him more lung support. While he’s sleeping, his heart rate is around 120, and his blood pressures are still soft but improving with a higher dose of Epi. He had to have an emergency trach change today — it seems the trach may have fallen out, which caused him to lose volumes. When we arrived, his eyes were rolling back, but he had just been given morphine after the trach change.

At the care conference, Kim brought up her plan and suggested doing a 21-day antibiotic course, asking whether that might help or if it could do more harm than good. After discussion, the team’s plan is to move forward with a 14-day course of antibiotics while we wait for Enbrel to (hopefully) start helping. The goal is for the fevers to space out or stop altogether, slowly wean Anakinra, and begin feeds again.

11/11/2025

Today’s Update on Jimmy

This morning was rough. We came in to find Jimmy’s blood pressure low and his heart rate up around 170 while he was asleep. His vent settings had to be raised, and his kidneys weren’t working as well as they should. His arms and legs were cold and he was shaking, and even though he was asleep, we could tell he was distressed. They started him on Epi to help with perfusion.

Later, while we stepped out for lunch, they needed to give him blood and had to place a new line for access. The good news is that he’s looking a little better now—his heart rate is down to around 150 and his color and temperature in his hands and feet have improved.

We spent the afternoon researching. Gene therapy steps, the possibility (or not) of CAR-T, and the risks around bone marrow transplant. Nothing is simple, and none of the answers are easy.

Kim started a notebook today—trying to document everything carefully. It’s something we’ve needed. I realized I used to do this kind of journaling on TikTok—sharing updates and processing as we went—before I started worrying too much about how it all looked or came across. I miss that. I think I want to get back to video journaling. Not for the algorithm. Not for pressure. Just to remember and to breathe.

One day at a time. Keep praying for our boy. ❤️

10/27/2025

The past two months have been spent in the hospital for Jimmy.

It has been a lot of up’s and downs for him unfortunately. He get’s better and then sickness strikes. It’s crazy to think that we spent so much time out of the hospital and avoided sickness and then in two months we have been sick 5 separate times. Makes me wonder what has changed.

In my mind there is really only 3 options.

1. Location...He’s in the hospital surrounded by sickness so he is getting sick easier. Especially since we aren’t there to keep a birds eye on everything.

2. Feeds. I don’t know if I posted this here but the ONE formula we found that worked for Jimmy was discontinued by Abbott and now the “replacement” formula has DHA and Lutein in it. I know those should be good but for some reason up to this point he is just not tolerating the new formula.

3. Progression of TRNT1. I am praying that this is not the answer. However, if his genetic disorder is progressing and taking a hit on his body it’s possible that is why we are struggling to get healthy and stay that way.

I was down there with him for 3 days last week and he was as happy as can be. The kid has the best spirit and he teaches me something new every day. Thank you to all those who are continuing to follow little Jimmy’s story.

10/27/2025

The past two months have been spent in the hospital for Jimmy.

It has been a lot of up's and downs for him unfortunately. He get's better and then sickness strikes. It's crazy to think that we spent so much time out of the hospital and avoided sickness and then in two months we have been sick 5 separate times. Makes me wonder what has changed.

In my mind there is really only 3 options.

1. Location...He's in the hospital surrounded by sickness so he is getting sick easier. Especially since we aren't there to keep a birds eye on everything.

2. Feeds. I don't know if I posted this here but the ONE formula we found that worked for Jimmy was discontinued by Abbott and now the "replacement" formula has DHA and Lutein in it. I know those should be good but for some reason up to this point he is just not tolerating the new formula.

3. Progression of TRNT1. I am praying that this is not the answer. However, if his genetic disorder is progressing and taking a hit on his body it's possible that is why we are struggling to get healthy and stay that way.

I was down there with him for 3 days last week and he was as happy as can be. The kid has the best spirit and he teaches me something new every day. Thank you to all those who are continuing to follow little Jimmy's story.

09/08/2025

Jimmy Update 💙

Good news—Jimmy hasn’t had any seizures for the past few days! 🙌 He had an MRI that showed what might be small strokes, but the doctors told us it could also be a mimic, and there’s really no way to know for sure right now.

Since coming off the Midazolam drip, he’s been slowly waking up, and today has been so much better. He’s tracking with his eyes and moving his arms and legs again 💙 Huge steps forward.

We’re so thankful for these improvements and continue to pray for more healing each day. Thank you all for lifting Jimmy up—your prayers and support truly mean the world. 🙏

09/02/2025

Back at the hospital this morning 💙
He’s resting peacefully. He’s still sedated ,but he has been moving his eyelids a bit and peeking out.

09/02/2025

I just watched this scene…
And when I tell you it hit hard that’s probably a huge understatement 🙌🏻🥲

It’s one of our most discussed (and debated) moments from Season 3. Little James has followed Jesus faithfully despite a painful disability. Now, when he rec...