This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

A tornado dropped out of the sky over a hill in a rural stretch of Newcastle, Oklahoma six months ago. Inside an underground concrete shelter just beyond that hill, 17 people and seven pets clung to each other. The grinder sounded like a freight train. Its winds grasped at the top of the shelter, then grabbed hold of its wooden door and pulled.

The winds tugged a chain securing the underside of the shelter door to a nail in the concrete wall. The chain grew taught. The wind gnawed and loosened the nail, extracting it like a tooth out of a concrete gum. Two men from the group jumped up and gripped the chain. The tornado lifted both men off the ground. They hovered there, clinging to the chain. The nail loosened, loosened. We’re done for, they thought. Then the tornado relented. Their feet touched the concrete slab beneath them.

True story. That’s what I’ve been working on these days.

It’s been six months since that twister hit my metro, first Newcastle, then south Oklahoma City then Moore. It took 25 lives and destroyed over 1,000 homes. I’ve been out asking people in the tornado’s path about life since. I found the beginning, the very spot where it formed, and asked questions there.

I was out getting a recovery story today in Moore, to the northeast of that spot. On the way back, I had more questions to ask. These were related to my son.

This one sums it all up:

Why can’t a baby get his medicine?

Just askin

Just askin

The short of it is, our insurer has declined to approve a request from Eli’s doctor for Synagis, a medicine meant to protect buddy from a severe type of cold called RSV this cold and flu season. A person with cystic fibrosis, like buddy, is at risk for severe RSV, according to the American Lung Association. Complications from RSV include pneumonia and lower respiratory tract infection. His regular physician and his CF Clinic friends feel Eli should have a series of shots that cost thousands of dollars to help protect him from RSV. His insurer has begged to differ.

My infant son has a deadly disease. His lung function, infection after infection, will decline until he can no longer breath. The hope is this will take decades, or, that a cure will be found in the mean time.

I want Eli to have the medicine his doctor ordered to protect him.

I had his doc file an appeal. I filed an appeal. I requested a case worker within my insurance company who called me today.

I called her back on the car ride on my way back from Moore.

The case worker is a nurse and my insurance company offers her help for free. Since Eli’s health issues are going to get more complicated, not less, I figured we could use someone to help us navigate the system, even one who is getting paid by the system.

It can’t hurt.

She explained where I could look online to find the policy online used by the insurer to justify the denial.

The insurer has determined the medicine is experimental.

I know that this is the answer, but I can’t accept it, I told her.

I’m not so great at being told “No.”

As in, “No, your child can’t have the medicine ordered by his doctor.”

I told her all of this.

If Medicaid is paying for shots ordered from Eli’s clinic, if his CF buddies in countries like Canada are getting the shots, why can’t my son have them, too? How is it experimental one place but not the other? Experimental in the eyes of a private insurer but not our government? Explain that.

I’d need to see the science backing up that decision.

“And I want to know who funded it.”

She checked to see if Eli’s doctor had called yet to request a “peer to peer” with the medical director at the insurance company whose decision it was to deny my son the medicine.

The doctor had not yet called. I’d asked him to days ago, but he hadn’t yet. She found a record of my appeal, not his.

When he does call, she advised he have studies on hand that backed up his decision to order the medicine.

I thanked her.

The case worker was a listening ear, if nothing else. For all I know, her hands are tied.

I e-mailed the CF Clinic coordinator and Eli’s lung doctor to try to find a study with which to arm my regular physician. Then I called my regular physician’s office to remind the doctor to call my insurance company. Have the doctor call me first, I told the receptionist. I needed to tell him about the study to have on hand when he talks to the medical director.

“And also, did they send the appeal or not? His nurse said it was sent, but the insurance company has no record of it.”

I don’t have time for any of this.

Back at the office I made plans to cover a different section of the recovery story. A vigil, at the site of a school wiped away by the twister. It took the lives of seven children inside. The teachers did everything they were supposed to do, but the tornado alley school had no storm shelter. An EF-5 tornado erases things from the earth.

These disasters are so humbling.

I’ve found as an outsider in this strange and fascinating place called Oklahoma, disasters are widely accepted as a fact of life. The disasters wreak havoc, the people help each other rebuild. I don’t know why they happen. Some give it up to God, some chalk it up to the universe, others to science.

There are forces at work in the world I don’t understand and I may never understand.

I just ask the questions around here. I try to keep it simple, logical.

Time marches on by and I can’t help but notice that, by and large, with rare exceptions (my son’s diagnosis being one of them) things like disappointment and tragedy have stopped shocking me.

I stop short of calling myself jaded because I know that deep down I hold onto hope.

If I keep asking questions, maybe something will improve, someone will understand. Maybe we will move forward, in a positive direction. Maybe Eli will get his shots.

Why can’t a baby get his medicine?

Hope

Hope

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