babies

“Not Medically Necessary”

/ Renee J / Leave a comment

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.

Life Can Sure be Sweet

/ Renee J / Leave a comment

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.