So after the appointment with the allergist, I got a call from the GI that they indeed had a cancellation come up. We met with Dr. Villalona and I told him with tearful eyes, "Something is wrong with her, I need help, she deserves answers". He asked a few odd questions.
Has she been tested for corn? No, but she eats it.
Does she cough and choke on things that she isn't allergic to? Yes, see, look at this video, and that's just a cup of water!
Dr. Villalona explained to me that to ensure she is thriving and doing well, she needs to be gaining 8gr/day, and she has been averaging 2gr/day since last September. She hasn't gained any weight since her birthday last September and has held her 22lb.
Her immune system is spiraling down and terribly dangerous, especially in the midst of flu season. We can't afford for her to get sick again, not after the last tummy bug that kicked her butt.
He suggested it's time to Scope her and see whats going on. He believes she may have Celiac Disease or maybe even Eosinophilic Esophagitis, EE. He will do an Upper Endoscopy and biopsy her esophagus, stomach, small and large intestines and that should give us the answers we are looking for, at least if nothing else it will rule two of the most likely things out.
The nurse came in and gave me several cans of formula, she is so sweet and our insurance isn't covering Elecare. AK ordered another case last week but it still isn't in, and the worst thing in the world that can happen is not to have food to feed your hungry child! We took our lab slips and ran upstairs with 20m left to spare at LabCorp to begin the bloodwork for surgery scheduled the following Thursday, March 21st.. that date sounds awfully familiar.
Only three sticks this time to get blood and they were done. Thank Heavens! I don't know why but that little girl has the toughest veins to draw blood from, every visit to LabCorp is heartbreaking. We got home again, around 6:30p, exhausted and heartbroken. What if my baby has Celiac Disease?! :( I began my week long of researching.
The next day I called the GI back and asked to reschedule the procedure. March 21st IS a big day. It's Madelynne's Birthday and also the day of my big, big meeting at work that I can't reschedule. We moved it to March 25th, the following Monday. Which is a good thing - it allowed for me to have my meeting and focus on getting ready for that, Mady's birthday was all about HER, we could throw two birthday parties and then put all the fun behind us and get back to reality on Monday and do the procedure.
I called the hospital and my insurance to make sure everything was covered and also get an idea of what we were looking like, cost wise. That conversation went a lot like this.
$5,000 immediate out of pocket
Then insurance pays 70%, I pay 30% until we reach $16,666.
It looks like at a minimum I will be paying, $8,918 for this procedure. Why the hell do we even pay insurance when every year I am forking out $20-30,000!! There goes our new house, again! Heartbreaking doesn't begin to touch how we feel about these bills. We work, hard, everyday and try to do well, everyday. We didn't ask for an unhealthy child, that's the gift we were given to be this blessing of a little girls parents and to be her best advocate to fight for what makes her thrive, smile and get the most out of life. It's just a shame that politically speaking - I work my butt off to make money, just to be screwed by insurances and government to have to pay ALL this money, because I make it. If I didn't have a job, this wouldn't be a conversation, all these expenses would be free. I have too much pride to take the ignorant way out, but gosh it makes me so mad! We deserve a nice house that we fit in and dream of!! We make the money to do it! We just get to drown in unnecessary medical bills instead. A constant frustration, that's for sure.
Anywho. In the meantime, I have been conscious of what to feed Annabelle and keep an eye out for the Gluten Free sections in the grocery store to see what may be in store for our future. Deep down I am worried sick about the procedure but I am trying my best to stay occupied and busy! Soon, were getting so close to answers and they just can't come soon enough!
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