Thursday, April 21, 2016

Shedding Stress

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Day 11 of Noah being sick.  The last five nights have been really hard on him with minimal sleep.  I can hear his stomach grumbling and growling causing him to arch and whine throughout the night.  Only finally giving in when the sun is nearly up.  Sleeping for sometimes what was 2-3 hours at best.  Three doctor's visits total with this illness and probably at least five more phone calls on top of that trouble shooting for advice.  With the vomit and diaherra stopped, Noah had this gurgle sound to his voice and extra secretions that he just couldn't process.  His doctor giving a best guess that Noah had a stomach bile acid problem secondary to illness.  Noah had tried a few medications for acid reflux in the past that failed, for a variety of reasons.  Some due to taste, oral texture, effectiveness etc.  His doctor decided to prescribe Priolsec which is time released. 

I was relieved because I felt like Noah would have some relief soon.  My local pharmacy didn't have it in stock, but I told Noah's nurse I'd drive as far as I needed to in order to get it if she located a pharmacy that had it.  She found one that was about a twenty-minute drive for me.  Not bad.  I lined up respite care for Noah so I could make the drive.   On my way there, Chris called to let me know Noah's doctor's office called with bad news; Medicaid was requiring pre-authorization for the medication.  I didn't really know what that meant.  This was the first time ever Noah ever needed pre-authorization for a medication for Noah.  I assumed it was simple - a signed form from a doctor explaining the need.  I kept driving assuming by the time I reached my destination all would be sorted out. 

Yet when I arrived at the pharmacy the pharmacist informed me that Medicaid could take up to seven days to decide to approve it or deny it.  That this wasn't going to be an immediate yes.  I said I didn't have time and was willing to pay for it out of pocket until she told me the price for the medication was $450.  While I was at the pharmacist Noah's nurse called and left me a message indicating that Medicaid did make a decision quickly and denied pre-authorization.  And refused to cover Noah's medication until he first tried two other medications - even though he already had many months ago.  Medicaid felt that his attempts at those medications were not "recent" enough and demanded that he try them again.

I'm not even sure I can express to you how incredibly backwards this logic is.  You force a child - or anyone for that matter to try two other drugs (which are costing the insurance company money) only to know they won't work and then forcing them to pay for a third.  And what makes Medicaid think that they know what a patient needs when they've never examined or seen that individual?  It was five o'clock and that I stood knowing all offices government and the doctor's  had closed.  It was game over for me.   The pharmacist feeling badly for my situation told me I could buy a generic medication and attempt to open it up and sort the beads - in a best attempt to divide the dosage by eye-balling it and then trying to find a way to get Noah to orally accept it in order not to gag and swallow it.   I tried to split one open to give Noah relief - those little grain of sand-like beads went everywhere - including shooting into one of my eyes at one in the morning.  I tried to sort what looked like equal amounts to come up with what might be around 10mg.  Nervous of course because these things should be pre-measured for him.  He did gag on it, and it was hard to get him to swallow the beads, they collected on his teeth as I did my best to force a swallow with a spoonful of juice.  I knew that this wasn't going to work. 

I wasted no time making phone calls this morning.  Medicaid customer service sent me to the Medicaid doctor's line - and they sent me back to Medicaid customer service . I got bounced around for a good half hour with no one willing to talk to me about the situation.  They claim it was illegal to do so, even though I was Noah's mother.   Noah's doctor wasn't sure really what to do either.  Their hands are tied.  It certainly isn't their fault that any insurance company denies a medication that is prescribed to a patient.  I was referred to the main campus to assist with filing an appeal of the medication.  They filed an expedited request to appeal but warned me it could take up to 72 hours to hear back.  Non-expedited responses from a prescription Medicaid appeal apparently can take up to seven days. 

This was my first prescription denial for Noah - he's used to denials of all kinds - so I guess it's no surprise that a prescription denial came his way too.  The very same day Medicaid denied a $104 part for his wheelchair.   Two hours later I received a call that the denial had been lifted and that the medication Noah needed was not only approved but waiting on him at his normal pharmacy pick-up across the street.  Certainly the fastest appeal process to date.   I still don't know how something so complicated turned out well in the end.  It certainly was a very big mess.   I am hoping that this brings Noah the relief he needs to get his stomach back on track and finally be able to rid himself of the complications this illness brought him.   I want my awesome little dude back to his happy self. 

He sucked down six pouches of organic yogurt, the first real attempt at food since he has been sick.  And kept it all down.   He was able to self-soothe himself today for small periods of time, although this evening he seems to be struggling a bit - a gag and cough reflex has presented itself and he is complaining and whining again.  I am hoping from being over-tired.  I can't tell if he's in pain, stomach ache, head ache, I have no idea.  I feel so helpless in not knowing or having the answers.   Deep down I'm so worried that I'll be up again all night long - difficult for both Chris and I who are tag teaming Noah in the night to try to get him through whatever is bothering him.

And I want to shed some stress.  I can't even begin to tell you what these last eleven days have done to me.  The panic and fear, the sleep deprivation followed by nightmares from being overly tired when I dozed for even five minutes - the worry, the laundry that wouldn't stop, two weeks of therapies and appointments that were cancelled.  Appointments I flat out missed or failed to reschedule timely - which is so uncharacteristic of me as I was knee deep in trying to get Noah well.  I felt like I was treading water at best and not doing a good job of it.   My mother did her best to take the load from me during the day offering me reprieves and help the best she could.   My soul feels worn out.  Each morning I just hope he's going to be back to his normal self.   So I can put this chapter behind me and say we made it through something really terrible and it's over and we conquered it.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.