Author: Renee J

“Not Medically Necessary”

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Denied

I have a love/hate relationship with our insurance provider.

We have private insurance through my husband’s employer, and without it, we’d be well over $750K in debt. So in many ways, I am incredibly grateful for it.

But it’s not free.

Between premiums, deductibles, and out-of-pocket maxes, we are drowning.

So when the dreaded package arrives in the mail, informing us:

“This claim is denied. After our review, it has been determined this procedure was not medically necessary.”

It takes the wind out of our sails.

17492832_10155042694115502_762686812060261926_oA Simple Procedure, A Complex Condition

Last month, Jackson needed ear tubes—a routine, 15-minute procedure.

Not a big deal, right?

For most kids, no.

For a child with Congenital Hyperinsulinism, it’s not that simple.

The procedure required general anesthesia, which meant he had to fast from midnight before surgery.

And that’s the problem.

HI kids can’t fast for long periods. Their bodies require constant carbs to prevent dangerous hypoglycemia. Jackson typically needs to eat every 2.5–3 hours—even overnight.

Working with Texas Children’s Hospital ENT and Endocrinology, we made a plan:

  1. He was admitted the night before the procedure.
  2. He had a full dinner, then was placed on a dextrose (sugar) drip.
  3. For the first time in his life, he slept for nearly eight hours straight!

His blood sugar remained stable, and surgery went off without a hitch.

We were discharged 45 minutes later.

The stay and surgery? A complete success.

The Dreaded Envelope

Then, this week—it arrived.

The thick envelope from the insurance company.

By now, we know what it means:

  • An Explanation of Benefits (EOB)
  • An appeals package
  • Another denial

This time? The hospital stay was denied.

“Not Medically Necessary.”

I’ve appealed before. It’s not that I can’t do it.

It’s that I shouldn’t have to.

They have all of his medical records. They know his condition. They know fasting is life-threatening for him.

Yet, every time, I have to send the same information, over and over again.

It’s exhausting.

But I’ll do it.

Because now, a new fight begins—and the fear of assuming $4,000 more in medical debt hangs over our heads.

Welcome to Holland

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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.

Life Can Sure be Sweet

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hihopes picture.pngMost days, our lives aren’t easy.

Five hospitalizations in the last few months have left us stressed, scared, and overwhelmed. But despite everything, we are stopping to enjoy the sweetness in our lives—because Jackson is about to turn one!

A Year of Challenges & Growth

In the last year, we have:

  • Learned so much and met some of the most amazing people.
  • Seen family and friends rally around us in ways we never expected.
  • Learned to advocate—for Jackson, for ourselves, and for others.
  • Watched our older child grow and mature, fighting for her little brother every step of the way.
  • Seen our “Sugar Baby” become a hero right before our eyes.

No, it’s not always easy. But life can sure be sweet.

Stability & The Next Big Test

Lately, Jackson has been mostly stable.

We still have scares—times when his sugar drops without warning, and we fight to bring it back up. But thankfully, that has become the exception rather than the rule.

In the next few weeks, he’ll be readmitted for his first Safety Fast since diagnosis.

The goal? To fast him on Diazoxide alone and see how long he can go without eating.

This isn’t a foolproof method, but it’s one of the only ways to gauge:

  • Is he getting better?
  • Is he getting worse?
  • Does he need an increase in medication?
  • How long do we have if he can’t eat before things take a dangerous turn?

So many things affect blood sugar—illness, pain, outside temperature, energy levels—so how he responds in the hospital may not fully reflect real life.

But it will give us a starting point.

And for now, we are holding onto hope and the sweetness of today.

CGM – APPROVED!

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After a long fight, the CGM was finally approved, and we love it!

We had to go through the State of Texas Independent Review Organization (IRO) for a final appeal, but UHC’s decision was overturned!

The reviewing doctor stated:

This young infant was diagnosed around four months of age with altered mental status and seizures. There was concern that he had been hypoglycemic and possibly experiencing seizures for some time. He has since stabilized on diazoxide. However, despite diligent blood glucose monitoring every three hours, frequent feedings, and conscientious medication administration, he continues to have severe hypoglycemia spells. He is unable to communicate symptoms with his parents, increasing the likelihood of severe hypoglycemia. This in turn increases his risk of brain damage and intellectual disability.

Use of a Dexcom G5 continuous glucose monitoring system would allow for near-continuous glucose monitoring, enabling the family to intervene as needed, preventing severe hypoglycemia and reducing potential risk for brain damage. This device is medically necessary and appropriate for this baby boy.

This battle involved hours on hold, countless phone calls, standing over fax machines, and more than a few tears on my end.

I’ll never understand why we had to fight so hard, but in the end, the reviewing doctor saw the severity of the situation and did the right thing.

Getting Used to the CGM

Right now, we have the CGM placed on his thigh. The first insertion was rough—he cried a lot—but we’re getting the hang of it.

He uses an iPhone as a transmitter, and as long as he’s on WiFi (like at daycare), I can check his sugar every five minutes through an app on my phone.

The system alerts us when his sugar is:
Dropping too fast
Under 70
Under 55

This device is absolutely worth the fight.

wehavehihopes cgm.png

Dr. David Paul, Endocrinologist, TCH

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Dr. David Paul: My Next HI Achiever.Hyperinsulinism Dr Paul TCH

Dr. Paul was Jackson’s endocrinologist at Texas Children’s Hospital (TCH). We met him on day three of our initial hospital stay, and he was with us for the long haul for many hospitalizations after.

I still remember the first time he walked into the PCU room. He took the lead in the conversation, and I stopped him.

“What is your name, and what is your role?”

Everything was a whirlwind… doctors and nurses coming and going like a revolving door. Everything was running together, and I couldn’t make sense of all the possibilities. But by that morning, I was ready.

I had a pen and paper in my hands, writing down everything he said. I wanted to know it all.

So many things were new.
So many things were unknown.
I was overwhelmed.
I was scared.

My son was sick, and I didn’t know why.

Initially, I refused to Google anything. Told family and friends that if they did internet searches, to please keep us out of the loop. I couldn’t go down a rabbit hole. I needed facts.

Dr. Paul was my main source of information.
He was going to figure this out, and I trusted that.

The Whiteboard Wall & A Doctor Who Listens

By the second morning, when Dr. Paul did rounds, this is what he walked into (see photo below).

Hyperinsulinism Dr Paul TCH 2

I realized the hospital room wall could act as a whiteboard. Our PCU nurse, Renee, gave me a marker, and I went all in.

You can’t see the other five feet of notes to the left of the picture. I needed to visualize it all, to make sense of everything.

Some doctors walked in and chuckled, joking that I looked like I was cramming for an exam.
Some were impressed.
Some didn’t even notice.

Dr. Paul?

He saw my notes and went through them, line by line.
Every. Single. Day.

He never rushed me.

There were times he’d stop by after his rounds, sometimes for an extra hour or more—just to answer my questions. We discussed research papers, case studies, and random thoughts I had in the middle of the night.

A doctor who doesn’t rush you?
A doctor who cares about what you think?
A doctor who engages a mother’s “Google doctorate”? (Yes, eventually, I gave in and started doing online searches).

He’s one of a kind.

An Unsung Hero in the HI World

I liked Dr. Paul right off the bat.

You can see the wheels turning when he’s faced with a complex issue. There’s no mistaking his candor or his intelligence.

Naturally, I searched for information about him online, expecting to find his name all over the Hyperinsulinism world, but my search came up empty.

Not that I need a doctor to have a shelf full of awards to be “experienced” enough to treat my kid, but I was surprised he wasn’t more widely recognized.

Dr. Paul has been treating HI since the 90s.
He has seen and treated more HI kids than most endocrinologists will in their entire careers.

So, while you won’t see his name in big fancy lights, he’s an unsung hero in the HI world.
And in our world, he’s a legend.

Beyond the Hospital Walls

Since our initial hospital stay, Dr. Paul has continued to be an incredible doctor.

✅ He’s visited Jackson during hospitalizations that weren’t even endo-related.
✅ He’s humored me by answering far too many emails and random questions.
✅ He’s introduced us to other amazing doctors.
✅ He’s advocated for us when Jackson was ambulanced to a hospital that was scared to treat him because they had never had an HI patient before.
✅ He’s answered texts on weekends when I was terrified.

Far more than any doctor in any other capacity would have ever done.

A Steady Anchor in the Storm

I truly can’t imagine going through this journey with another doctor.

And trust me, we’ve met a lot of them.
Even other experts.

They were all great, fantastic, even.
But they’re not him.

Not only has he been amazing for Jackson, but he has pushed me to be a critical thinker. Honestly? He makes me wish I had pursued a career in medicine.

Since August 2016, our lives have been unpredictable.
It often feels like we’re caught in a tornado… twisting, turning, at an unpredictable pace.

And the one thing anchoring us down?
Him.

He keeps my fears in check because I know my son is in the best hands possible.
I can ask anything, no matter how silly it may seem to me, and he’s right there to answer.

Dr. Paul will do whatever it takes to keep Jackson safe and healthy.

And I trust him with Jackson’s life.

There’s no better feeling in the world than that.

#WeHaveHIHopes

CGM Denied… Again

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The Dexcom was denied once again after an urgent appeal to United Healthcare.

Ugh. This is frustrating.

The letter stated that I was out of appeals and that my next step would be to involve a third party review.

The reason?

The FDA has only approved the CGM for Type 1 Diabetes.

I’m just one mom—there’s no way I can get the FDA to help us, right?

I understand that insurance companies care about the bottom line. I really do.

But this morning, when Jackson’s sugar dropped into the 60s without warning, we would have known he was declining if he had this machine.

To the doctor making this decision:

To you, he may just be another claim.

To me, he is my whole world.

Please do the right thing.

Insurance Denies – CGM

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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.

HI Achiever – Angelica

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Introducing: Angelica.

Angelica was Jackson’s daycare provider at A Lifetime of Learning, working under the most incredible, loving, and compassionate owner, Brandy Perez.

When Jackson first started showing symptoms, the ER doctor told us he was fine—that nothing was wrong.

But she and I both knew better.

Before Jackson’s diagnosis, he stopped crying for food. Looking back, I think he simply didn’t have the energy to communicate because his blood sugar was dropping so low.

At home, I kept pushing him to eat.

And so did she.

I told her the doctor said he was fine, but in my heart, I knew something was wrong. Still, I second-guessed myself.

In her heart, she knew something was wrong too.

For days—unknown to each other—we were both feeding Jackson on a strict schedule, making sure he ate every three hours, giving him carbs to fuel his body and brain.

Most people might have assumed,
“He’s not crying, so he must not be hungry.”

Or,
“He’ll cry when he needs to eat.”

But not her.

She made sure he ate every three hours, like clockwork—keeping him safe, stable, alive.

By the time I was certain something was wrong, I confided in her.

I will never forget the relief on her face when I told her I was seeking another opinion.

That look confirmed everything. I wasn’t losing my mind. Something was wrong. And she agreed.

A Lifeline

Angelica is Jackson’s daycare teacher.

I have thanked her and cried with her more times than I can count—but it never feels like enough.

How do you thank someone for helping to prevent brain damage in your child?

How do you thank someone for keeping your child alive?

You can’t.

No amount of “thank you’s” or tears will ever be enough.

We owe so much to her.

I dread the day Jackson outgrows her classroom. The thought makes me queasy.

She continues to take such incredible care of him—checking his blood sugar, feeding him, helping him meet milestones, and providing a safe, loving place for him to learn and grow every single day.

I wish I could keep them together forever.

I trust her as much as I trust myself—and that says everything.

Angelica, Thank You.

Thank you for being kind, loving, intelligent, and for trusting your instincts.

We are so blessed to know you—and I am honored to share my son with you.

There are plenty of great things to say about his daycare, but I’ll save that for another day.

This one belongs to Angelica.

HI Achievers

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I’d like to highlight all of the people and medical professionals that help guide us on our journey. There are already so many! We live in Houston, TX, with access to the Houston Medical Center. We’ve met fabulous doctors, organizations that raise money and awareness, and many unlikely heros.