12/07/2025 UPDATE ON JACOB

 12/07/2025

✨ Update on Jacob ✨

It’s been two days since our unexpected ER visit, and I’m so grateful to share that Jacob is doing wonderfully! 🙌

For the first 24 hours, we relied on the water chamber (cascade) to help stabilize things. Now, Jacob has successfully transitioned to an HME (Heat Moisture Exchange). The difference is visible—you can actually see the moisture in his line now, a small but powerful sign of progress.

Moments like these remind us of the incredible power of prayer. Don’t ever stop praying!!! Each step forward is a testimony to faith, perseverance, and the love that surrounds Jacob.

We also want to extend a huge thank you to folks like Amy Malone for her guidance, and especially to Mike Walker—who has faithfully reminded us for two years that the HME was the way to go. Your wisdom and encouragement have been invaluable, and we’re deeply grateful for friends who walk this journey alongside us.

12/05/2025 A Scare, and Finding Moisture for Jacob’s Lungs

12/05/2025 

About a month ago, when Jacob’s trach was changed, we noticed something alarming: a lot of bright, arterial red blood. This ended up resolving itself after a 24 hour period. 

A month later, it happend again! At first, we thought it might be a nosebleed. But when it didn’t stop after two days, our concern grew, and we decided it was time to head to the emergency room.

At the ER, Jacob was scoped to see what was happening. Thankfully, his vitals were good—though his heart rate was elevated, as it always is when he’s nervous at the doctor. What they found was surprising: Jacob was extremely dry on the inside. His nasal cavity, sinuses, throat, esophagus, and especially the airway leading into his lungs were raw and irritated. In fact, there were scabs forming where the suction catheter had rubbed against the dry tissue in his airway.

After nearly five hours in the ER, we were discharged with instructions: medications for his nose to ease dryness, salves to soothe irritation, and most importantly, a way to get moisture into his lungs.

There are two main options for humidification with a tracheostomy:

• Heat and Moisture Exchanger (HME): A small device that warms and humidifies air, replicating the nose’s natural function.

• Heated Water Chamber System: A setup where air passes through warm water via two hoses, picking up humidity before reaching the lungs.

We tried the HME first, but Jacob couldn’t tolerate it—it felt too restrictive, like he couldn’t breathe. So we turned to the water chamber system. Though it’s a bit more equipment, it worked. The warm humidity eased his airway, and Jacob could finally rest.

We’re back home, Jacob is in bed, and all is well. We’ll keep monitoring him and follow up with our family doctor, but for now, we’re grateful for the solution that helps him breathe easier.

11/21/2025 Today reminded me how quickly life can change… (Book End)

11/21/2025

While I was out for a haircut and picking up hoses for Jacob’s respirators, Barb called me in a panic. Jacob had developed a dangerous mucus plug, and his inspiratory pressure was skyrocketing. He was in real trouble.

But Barb—calm, faithful, and courageous—remembered her training. She grabbed the Ambu bag, freed the obstruction, and brought Jacob back to safety. She is our HERO today. What she did was no small thing… it was an emergency that would overwhelm most people, yet she handled it with grace and strength. I could not be more proud of my amazing wife.

Tonight, before bed, I read Jacob our Bible Verse of the Day. The Spirit nudged me to read the whole passage, and it spoke directly into this moment:

Isaiah 43:1–3 (NLT)

“But now, O Jacob, listen to the Lord who created you.

O Israel, the one who formed you says,

Do not be afraid, for I have ransomed you.

I have called you by name; you are mine.

When you go through deep waters,

I will be with you.

When you go through rivers of difficulty,

you will not drown.

When you walk through the fire of oppression,

you will not be burned up;

the flames will not consume you.

For I am the Lord, your God,

the Holy One of Israel, your Savior...”

Sometimes, God’s Word arrives exactly when we need it most.

11/13/2025 Tracheostomy Change

 11/13/2025

It has been 60 days since Jacob's last trach change. We elected to do it today with the help of Jeremy and Mark Toole. This change was again, awesome! 

Jacob was completely at ease for this change and everything went fantastic. We experienced no issues whatsoever!

10/27/2025 Treatment #18: ION363 PHASE III #3

10/27/2025 Treatment #18: Courage, Community, and a Springsteen Surprise

We rolled into Ohio State University on Sunday with hearts full and spirits high—ready for Jacob’s 18th #Jacifusen treatment. These visits have become familiar, but never routine. Each one carries its own weight, its own prayers, its own quiet hope.

Jacob was ready. We were ready. And once again, Dr. Kolb and his incredible team met us with warmth, precision, and care that goes beyond medicine. The dosing went smoothly, and Jacob entered recovery with strength and peace. He rested for three hours while we reflected on how far we’ve come.

But this trip held something new.

Jacob wanted to go to the movies.

Since the tracheostomy, outings like this have been rare. We’ve learned to adapt, to simplify, to choose rest over risk. But this time, Jacob had a request—and it was "Springsteen: Deliver Me From Nowhere". So we said yes.

We didn’t know how it would go. But we knew it mattered.

And it was beautiful.

Afterward, we went back to our hotel and watched Monday Night Football, and enjoyed a great night's sleep. Tuesday, we made the long drive home, the kind of ride that invites quiet reflection. Jacob did great. He’s resting now, watching a little TV, and we’re holding onto the grace of the day.

We love OSU. We love our team. And we love the moments—big and small—that remind us Jacob’s story is still unfolding, full of surprises, full of strength.

10/16/2025 Dunbar Medical Check Up

10/16/2025

We had our 6 month check up with Dr Trump today. Everything is perfect. Blood pressure, oxygen levels, pulse, temperature, everything! Jacob continues to be amazing!!!

10/14/2025 Caregiving is no small task.

10/14/2025

Caregiving is no small task. It’s a journey filled with constant responsibility, and sometimes, one slip-up can feel like the world is crashing down.

Last night, I followed our usual bedtime routine with Jacob — removed the eyelid tape and got him settled in. But this morning, he woke up complaining that his eyes hurt and asked for drops. A few hours later, his eyes looked awful. I immediately messaged Dr. French, who said they looked very concerning and wanted to see Jacob that afternoon.

By 2pm, Barb got home and realized I had forgotten to take out Jacob’s scleral lenses the night before. They’d been in for nearly 20 hours. I was devastated. I cried and cried — I couldn’t believe I’d missed something so important.

But through prayer and grace, what seemed like a serious issue turned out to be a fixable mistake. Dr. French prescribed antibiotic drops, and Jacob should be back to normal in a day or two.

Lesson learned — this dad won’t be making that mistake again. 🙏