Texas

Failed Cure Fast and New Challenges

/ Renee J / Leave a comment

Jackson didn’t pass the cure fast. He became unstable quickly, and I cried—a lot. I was so desperate for relief. But if there’s a silver lining, it’s that he isn’t worse. We are still managing his disease as we always have. Hyperinsulinism continues to be our reality.

Due to some scheduling delays, we got a late start. We officially began the study on Saturday afternoon, and within 24 hours, he became unstable. He started requiring feeds every two hours just to keep his blood sugar above 70. About 20 hours off diazoxide, his blood sugar was headed into the 40s—a clear sign that he is still severely hypoglycemic.

We administered double the glucagon we had in the past to bring his sugar back up. We also ran critical labs again. The results, once more, confirmed congenital hyperinsulinism—ketones were at 0.10, and insulin levels were high. With that, we stopped the study, restarted his medication, and spent the next few days rebuilding it in his system to get him stable again.

Finding Strength in Unexpected Places

During this visit, we were blessed to be followed by Dr. Nadia Merchant, who consulted with Dr. Paul along the way.

Dr. Merchant is an incredible doctor, originally pursuing a fellowship in genetics before shifting to endocrinology—two of the most complex fields of medicine. She’s also one of the most intelligent women I’ve ever met.

And she knows a thing or two about overcoming obstacles. Dr. Merchant is a little person, standing at 3’6” tall. She told us how people always tried to put her in a box, to limit her. But her parents never let that happen—they pushed her. She wasn’t allowed to use her genetic condition as a crutch.

She sat with us for nearly an hour. She knew how disappointed we were, but she reassured us—there is still so much to be thankful for. And we agree.

  • Jackson has medication that works—and works well for him.
  • We live in the U.S., with access to some of the best doctors in the world.
  • We live in Houston, home to the Texas Medical Center and a hospital experienced in managing HI.
  • We have doctors who truly care about Jackson—not just as a patient, but as a person.

We have a plan moving forward—more tests, more programs, more opportunities. Dr. Merchant isn’t even our main doctor, but she committed to seeing us through. She admitted it won’t always be easy, but with such a strong support system, she believes Jackson’s potential is limitless.

It’s not the answer we wanted. But we’re committed to making the best of our situation.

New Challenges: The Battle Beyond HI

Unfortunately, HI isn’t the only thing we’ve had to worry about.

Jackson’s lungs continued to deteriorate. Nine hospitalizations, each requiring high-flow oxygen just to get him through various viruses.

We cycled through diagnoses:

Reactive Airway Disease
Asthma
And then, a ton of possibilities that didn’t fit.

Inhaled steroids? No improvement.
Breathing normally? Never.

After countless appointments, a triple endoscopy, a swallow study, and permanent lung damage, we finally learned the truth:

He has silent aspiration.

He has been aspirating his whole life, and we never knew.

The cause?

  • A laryngeal cleft
  • Vocal cords slightly too short, preventing them from closing properly

Last week, he had two procedures, and we’re praying for improvement.

This road is long. It’s exhausting. It’s heartbreaking. But it’s also filled with hope. Because no matter how many times we fall, we keep getting back up.

#WeHaveHIHopes

Dr. Jason Goldberg, UTMB – A True HI Achiever

/ Renee J / Leave a comment

Dr. Goldberg was thrown into the HI world by chance, a perfect storm that brought him and Jackson together. Maybe it was divine intervention.

As many know, Texas Children’s Hospital has been instrumental in diagnosing and treating Jackson’s Hyperinsulinism, but our journey started before we ever landed on their doorstep. It began in Dr. Goldberg’s office… with me, scared and desperate for help.

I had no idea that the new doctor we had to see by default would become the one to help save Jackson’s life.

Dismissed at the ER, Searching for Answers

When Jackson had his first seizure and started acting abnormally, we went to our local ER. The attending dismissed us.

I now know this happens all the time with HI kids. No one looks at a baby and thinks, “I wonder if they are hypoglycemic?”

This doctor made me question myself. He laughed off our concerns and said, “Babies do this all the time when they’re teething. It’s completely normal.” He told us that since we had such a large age gap between kids, it was understandable that we’d overreact.

I regret taking his words to heart.

Because Jackson continued to suffer. His brain continued to suffer.

I became too unsure of myself to seek an immediate second opinion. But after three more days of Jackson’s temperature running cold, zoning out, losing energy, and not crying for food, I couldn’t wait any longer.

Enough was enough.

Meeting Dr. Goldberg

I called our pediatrician’s office for a same-day appointment. She was out. The only option? Dr. Jason Goldberg at UTMB.

I’ll be honest, I was a little disappointed to see someone new. I wasn’t in the mood to deal with an unfamiliar doctor. But I trusted the office, so we took what we could get.

On the drive there, I knew I wasn’t leaving without answers. I couldn’t have another doctor dismiss me. I needed someone to listen.

Dr. Goldberg walked into the exam room and introduced himself.

Before he could say another word, I pounced… looked him dead in the eyes, more desperate than I had ever been, and said:

“Something is wrong with my son. Don’t tell me I’m overreacting. I have common sense, and I am not going to be dismissed. My son needs help.”

I was straightforward and maybe even a little rude.

But he didn’t flinch.

“Okay,” he said. “You know him better than anyone. If you tell me something’s wrong, then something must be wrong. Start from the beginning.”

So I did.

I could see it in his eyes, he knew something wasn’t right. He suspected neurological issues.

Then, he said the words that changed everything:

“Get in your car and head straight to Texas Children’s.”

“If they won’t see him, call me. If I have to keep this office open late and bring in a specialist, I will. Whatever we have to do, we’ll do it. We’ll figure this out.”

I took Jackson and drove straight to TCH.

You know the rest of the story.

When we arrived, Jackson’s blood sugar was 21 and likely moments away from brain damage or worse.

We arrived just in time.

More Than Just a Doctor

Dr. Goldberg continued to follow Jackson’s case through UTMB’s shared system with Texas Children’s.

During our initial three-week stay, he even called us personally just to check in. Not because he had to, but because he cared.

When we were ready for discharge, TCH recommended switching Jackson’s primary care to their system for easier coordination. It made sense.

But we weren’t going anywhere.

Dr. Goldberg helped save Jackson’s life. We were staying with UTMB. We were staying with him.

A Rare Doctor for a Rare Kid

Since then, Dr. Goldberg has:

  • Researched Hyperinsulinism and Diazoxide to prepare for Jackson’s care.
  • Seamlessly coordinated between UTMB and TCH to ensure the best treatment.
  • Never rushed us, no matter how busy he was.
  • Always looked at the whole picture, asking questions and researching every possibility.
  • Truly cared—about Jackson, about our family, about this journey.

There aren’t many doctors like him.

We could never repay him for what he’s done… for keeping Jackson safe and healthy, or for the sanity he’s given me on the hard days.

Days when I’ve shown up at his office stressed, scared, tired, overwhelmed, or even in tears.

Dr. Goldberg is who you want in charge of your child’s health.

My rare kid has a rare doctor.

We’re pretty lucky.

Welcome to Holland

/ Renee J / Leave a comment

WelcomeIn the last several months, I’ve come across an essay titled “Welcome to Holland” over and over again. Some people love it, others don’t, but I think it’s a simple way to put something so complex into an analogy that everyone can understand.

Welcome to Holland

By Emily Perl Kingsley

“I am often asked to describe the experience of raising a child with a disability—to try to help people who have not shared that unique experience understand it. It’s like this:

“When you’re going to have a baby, it’s like planning a fabulous trip to Italy. You buy guidebooks, make plans—The Colosseum, Michelangelo’s David, the gondolas of Venice. It’s all very exciting.

“After months of eager anticipation, the day arrives. You pack your bags and take off. But when the plane lands, the stewardess announces: ‘Welcome to Holland.’

“‘Holland?!’ you say. ‘What do you mean, Holland? I signed up for Italy! I’m supposed to be in Italy. All my life, I’ve dreamed of going to Italy!’

“The stewardess replies, ‘There’s been a change in the flight plan. We’ve landed in Holland, and here you must stay.’

“The important thing is, they haven’t taken you to a horrible, dirty, diseased place. It’s just… different. So, you must buy new guidebooks. Learn a new language. Meet people you never would have met. Holland has windmills. It has tulips. It even has Rembrandts. But everyone you know is coming and going from Italy, and they’re all talking about what a wonderful time they had. And for the rest of your life, you will say, ‘Yes, that’s where I was supposed to go. That’s what I had planned.’

“The pain of that will never fully go away, because losing that dream is a significant loss. But if you spend your life mourning that you didn’t go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.”

Navigating Between Worlds

Some days, I feel like I’m in both places at once.
Other times, I feel like I’ve been dropped into Greenland, so far removed from everyone else.

The point of the essay is simple: Life doesn’t always go as planned.

I’ve been a parent for nearly 15 years, and while things haven’t always gone the way I imagined, I never expected this journey.

When you’re pregnant, everyone asks, “What do you want? A boy or a girl?”

The standard answer? “I don’t care, as long as the baby is healthy.”

And I meant it.

With genetic testing before pregnancy, high-risk appointments every two weeks, countless ultrasounds, I really thought we would land in Italy—safe and sound.

I never even considered a detour.

Grieving the Childhood I Imagined

I’ve probably spent too much time mourning the loss of a ‘typical’ childhood for Jackson.

I fear his childhood memories will be filled with:

  • Hospital rooms and beeping monitors.
  • Machines and constant pokes.
  • Being woken up every night and forced to eat.
  • Stressed-out parents, worried about him, about money, about everything this life entails.

I hate that for him.

But I can’t change where life has taken us.

What I can do is stop and appreciate the beauty in our Holland.

I have been entrusted with two beautiful children, who love me, who make me a better—albeit exhausted—person.

This journey is hard, but I promise you, it’s worth it.

I just hope we can stay in one place for a while…

I’m not ready to be a world traveler.

Insurance Denies – CGM

/ Renee J / Leave a comment

Jackson’s endocrinologist requested a Dexcom G5 Continuous Glucose Monitor, warning us that insurance would likely deny it.

I seriously thought, there’s no way. How could they deny a device that could literally save his life?

Since Jackson’s birth, I’ve spoken to our insurance company many times—and honestly, they’ve always been pleasant to deal with. No issues at all.

So when they denied the claim—even after prior authorization—I was shocked.

Yes, I had been warned, but they had been so easy to work with before. I expected more from them.

The Call

I decided to call and talk to them.

Surely, if they understood Hyperinsulinism, they wouldn’t deny it, right?

Wrong.

Their reason?

“BECAUSE PATIENT DOES NOT HAVE TYPE 1 DIABETES, THIS DEVICE IS NOT MEDICALLY NECESSARY.”

Deep breaths.

So I calmly explained:
✔ He doesn’t have diabetes but has a disease that affects his glucose levels.
✔ He is severely hypoglycemic.
✔ If his blood sugar drops and I don’t catch it, he could suffer brain damage or worse.
✔ He’s six months old—he can’t tell me if he feels unwell. This machine would communicate for him.
✔ This machine isn’t just for diabetics—it’s for anyone who needs 24/7 blood glucose monitoring.

Still not enough justification.

The Appeal

In desperation, I submitted an appeal, explaining everything I knew about HI and begging them to reconsider.

Julie from Congenital Hyperinsulinism International also wrote a letter, urging them to look at the facts.

The truth is, if Jackson suffers brain damage, the long-term medical costs will far exceed the cost of this device.

It’s the right thing to do—and it would save them money in the long run.

They said they’d make a determination in 30 days.

So… we wait.