Tuesday, March 14, 2017

when spina bifida clinic kicks your tail...



There was a bit of a development as our time in Nashville progressed... 


Things said on Sunday: 
"Spina Bifida Clinic has arrived!! Bring on the docs!"


Accessible playground fun before heading to the hospital! 



 Things said on Monday night: 
"Spina Bifida Clinic is finally over. And it kicked our fannies."

For those of you just tuning into our corner of the world, Spina Bifida Clinic is a routine bunch of appointments set up by our hospital. We are a part of the Spina Bifida Clinic at Vanderbilt Children's Hospital in Nashville, where Eliza is seen by some of the world's best pediatric specialists! Our clinic coordinator, Rose, arranges all of our appointments and we just show up with a six pack of Red Bull and a can-do attitude. 
The Red Bull part isn't really true. I'm more of an iced coffee gal. But it legit does take quite a few to get us through the ordeal. 

A typical clinic starts at the crack of dawn with a wide assortment of tests and scans. Sometimes, these are evasive enough that Eliza even has to be put to sleep. It all just depends on what our docs have requested based on her age and needs. Some of the specialists we see at Vanderbilt include neurosurgery, orthopaedics, urology, gastroenterology, physical therapy, occupational therapy, and nutrician. As you can imagine, scans for many of these, followed by appointments with each, make up a pretty exhausting experience. The great part is, by seeing everyone in one seemingly neverending visit, we don't have to make individual trips to Nashville every couple of weeks! 

And this time, we had our first ever negative visit. 
Whomp. Whomp.

The giant storm cloud? Major changes to Eliza's typically perfect urological scans showed that it's time for some big daily intervention in order to protect her organs. What does this mean? Basically we have to dramatically alter her care in order to prevent any further damage to her bladder and kidneys. 

This sort of thing is very, very normal in the spina bifida world. We've just been incredibly lucky thus far to be able to avoid complications. But while we knew in the back of our minds that it was an impending hurdle, I can honestly say that we weren't prepared for the news yesterday. All of her previous scans have been so good, and she hasn't been sick! We didn't expect this bombshell at clinic this round and we felt a bit blindsided by the problem. Y'all know how this plannin' mama feels about surprises... Spoiler alert: I hate surprises. 

Thankfully, our Vanderbilt family took extensive time to teach us how to handle the situation, and best prepared us to care for Eliza from here on out. 

As we drove home from Nashville, contemplating what life would look like now, we were also notified by our insurance company that none of her medically necessary supplies would be covered!! None! Nada! Zilch! Go plant a money tree, Wilders, because us insurance folks aren't helping you one bit. My brain couldn't compute how our perfectly ordinary health insurance company would rather deal with an organ transplant or kidney dialysis than just pay for some dumb daily supplies. 

Boatloads of frustrations yesterday, guys. Giant boats. Barges. So much defeat. 
Obscenities were left in both the Vanderbilt Clinic and along I-65 on the way home.
Just keeping it real, folks. 

But today.... Today is a new day, y'all. 
Today has been day one of a new care plan for Eliza, and thankfully she has taken to it well.
Today is the beginning of a lengthy medical appeal process for us, and we're optimistic that someday these dummies at the other end of our insurance policy will approve her necessary care. 
Today is the day that several other spina bifida moms across the country have volunteered to ship their own supplies to us to help get us through a few weeks before we have to shell out the big bucks!! Special needs families for the win! 
Today is the day we remember to celebrate all the other specialists at Vanderbilt that gave Eliza gold stars! 
And today is the day that, despite the frustrating setbacks, we're still crazy thankful for our awesome medical team and how God keeps using folks in our lives to keep our sweet girl rolling! Thanks for the encouragement, friends! 

God doesn't always answer our prayers in the ways we plan, but He certainly carves out His path for us to faithfully follow. And we know He'll come thru for us here as well. Even on the hard days, we certainly feel like a pretty lucky little family! 




I mean, with faces like these, who could be down and out!?


 P.S. Y'all say a prayer for the poor soul at United Healthcare, who has caught the Wilder wrath two days in a row! May he get a raise and a few extras days off! 



8 comments:

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  2. Hi! I found your blog online and just wanted to share that I have a dear friend that has had similar issues with insurance and was able to get Medicaid (government assistance) to provide supplies. I don't know a lot of details but I do know that both parents work and they have plenty of money, but somehow still qualify. Something to look into?

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