Meet CASE!

This amazing boy was born 12-21-10 at a whopping 2 pounds, 13 ounces due to an unknown syndrome and Inner-Uterine-Growth-Restriction. His doctors didn't expect him to live but living life to the fullest is what he does!!!!
This Is his story:
-Case was born with a multi-cystic, dysplastic non-functioning left kidney (that has since shriveled up) and fluid pockets on his right.
-He is currently J tube and TPN dependent and fed 24 hours a day intervieniouly and straight into his intestistines due to swallowing issues, poor motility and intestinal issues.
-He has suffered from Crainiosynostosis (Sagittal), Chairi Malformation a tetered spinal all corrected via surgery hopefully to never return......
-He was born with an ASD, VSD, PFO and several "normal variants of the heart that are currently stable.
-He suffers from Failure to Thrive and extreme short stature.
-He started growth hormone therapy in March, 20015. He gets daily shots and they are WORKING!
-About a year ago, he passed out in a hypoglycemic shock with sugars below 20. He was quickly stabilized being we were at the hospital (thank God)....He still suffers from severe Hypoglycemia and can not go without nutrition for more than two hours, even at night.... He has home health nurses at night and while at school.
-Case also has very severe GERD on top of the motility issues and lack of function in his gut. He was unable to tolerate night feeds and is now on TPN and Lippids through a central line in his chest. He takes several medications to help but nothing seems to completely work....
-Due to lack of growth and intestinal failure he had his central line placed 1-20-15 (this is a semi-perminante IV in the major vein by his heart).
-On top of all of this Case was born with many birth defects and congenital anomalies. We hope to some day have a "name" to go with what ever syndrome he suffers.....but for know, we are blessed to have our boy with us.

Tuesday, July 3, 2012

I. Am. Out. Of. Control.

It's true. I am out of control. I had no control over how Case was made. I ate the right foods (ice creams good for unborn babies, right?). I took my vitamins. Drank lots of water. I didn't do drugs, smoke or drink. I rested a lot and still Case was made different. He was born with "defects". A child that would have possibly been medically aborted if he was in a different belly. All that to say he was made the way God made him for a reason and I was out of control. Even now I can't control how things go. I can't make him eat and have been having a hell of a time making him grow. Sometimes I get a real wake up call as to how our of control I really am. A week or so ago I realized Case's medical card stooped and he was thrown into an HMO by "random selection" (WTF, right?). Long story short by the time I realized what was going on it was "too late to change his HMO for July" and the HMO I picked wouldn't go into effect until August. No big deal, right? WRONG! The HMO they "picked" doesn't cover Pittsburgh Children's or Chartwell (his feeding supply company). Oh. My. God. I flipped the freak out. I cried, or more like sobbed. What about his upcoming surgery? Or emergency care? What if he pulls his GJ out? Why me?! "Well, you just need to pick another hospital." Says the rep. from CoventryCares (his sucktastic HMO). Uh, dude...this isn't a dentist or a chiropractor. This is THE hospital that my special needs child NEEDS to go to. Cheese and rice this guy really irked me. After a million phone calls I talked to a lady that said said she is going to get him"expedited" out of this HMO (cause I'm gonna tell ya, so far Coventry-doesn't-care) and get him into the HMO of my choice. Easy enough? Not really. That was 11 days ago and he's still in this HMO. We've talked and she's working on it. The good news is, if there is an emergency I was told "CoventryCares" will go out of network. Bad news is his feeding supply company isn't covered and his surgery may need rescheduled. Long story short. I need to let go and let God. Worrying is a waist of time and quite frankly exhausting. This is not my baby. He has a bigger purpose and by golly if what doesn't kill you makes you stronger, either Coventry"cares" will be the death of me or I'll be pretty damn strong!!

"Insurance problems? What-evs. I'd rather swing then worry."-Case
:)

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