G-tube Formula

June 12: For most of the day I was on fire. A day filled with swimming lessons, Cub Scout day camp, Space Magic presentation at the library, checking out a ton of books, letting the boys pick a movie to rent. Summer as it’s meant to be.

Then I got a call from Robbie’s feeding equipment supplier that knocked all the wind out of my sails. Shoot, it burned down the ship. Coverage for his monthly shipment of formula is being denied. Again.

In March/April I spent 3 whole weeks trying to get Robbie's formula covered (like it has with all of our previous plans) and thought I succeeded...and now I’m back at square one.

Medical Plus Supplies had told me in April they had finally figured it out and then sent 2 months in a row of supplies after taking my $486 monthly co-payments that I THOUGHT were being applied to Robbie's deductible. Guess not. I was told those claims were coming back denied by BCBS. And I only have 3 days worth of his food left at the house.

I was on the phone for 2.5 hours until the medical supply company closed for the day and the BCBS representative promised to call me back first thing in the morning. My eyes sting from crying so hard. Now I'm really nervous about whether they will cover the month of therapy at the hospital when it’s needed now more than ever to start the process of weaning him off the feeding tube (and the DME and Insurance drama).

Keep us in your prayers. And be patient with me if you happen to see me suddenly acting weird over seemingly insignificant things totally unrelated to this situation. Trust me, I know it’s odd. This heavy stress and anxiety that’s been building has started manifesting itself in unexpected ways lately and I’m trying to figure out how to deal with it while being so exhausted. There has to be middle ground between pretending everything’s ok and having a meltdown.
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Night of June 12: I HAVE 2.5 DAYS WORTH OF FORMULA IN MY HANDS, 30 MINUTES BEFORE THE PHARMACY CLOSES!! Whew!!! Such a relief!!!

It took 2.5 hard days, hours on the phone, Walmart had to order the Nutren Jr with Fiber for me, I still had to pay for it out of pocket...but Robbie will be able to eat this weekend and I will deal with the rest on Monday. This is far from over and I will share more later, but this chick’s done battling for the night! 💪🏻👊🏻

June 22: Autrey and I are having a special fast in Robbie’s behalf this weekend and we are inviting you to join us.

Next week is when the hospital files the preauthorization claim to BCBS for the inpatient intensive feeding therapy. I’m still battling to cover formula but hoping we can pull this one off in the meantime. My stomach is in knots after the last week and a half of ‘enthusiastic advocating’ on the phone.

If the past few years have taught me anything I know my prayers don’t always get answered HOW and/or WHEN I want them to, but I’m praying that Robbie is somehow able to get the care he needs to progress and thrive.

🙏🏻🙏🏻🙏🏻

And as of yesterday I found out they also denied coverage of the actual feeding bags. Yeah, the bags that are needed to use the pump. I’m confident they will reverse that one. But still ridiculous.

Also, I got a call from a debt collector AGAIN sent from the medical supplier for bills they NEVER sent me but that I called about and paid back in March...and they actually partially waived because they screwed up. The medical supplier apologized and said they would take of it. But it was just one more annoyance.

However, the big win for yesterday is the Nestle assistance program came through and sent the full 12 cases allowed per year free of charge (about 2.5ish month supply pictured below) 🎉🎉🎉 so I don’t have to worry about getting more food until I figure out Insurance appeals, the slim chance Autrey’s job will change the plan, or if we will go with the Medicaid buy-in program I applied for since our plan also has hard limits for outpatient therapy our old one didn’t that would cost us even more out of pocket than the food.

But one problem at a time: Your prayers in regards to the intensive feeding therapy are much appreciated!