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.

Thursday, October 25, 2012

Oh HMO..


Oh HMO, you are a necessary evil. You started annoying me when you took the 8 hour day nursing care away from me because "I don't need it". Then, you decided not to cover ANY of the cost associated with Case's generic test (The Whole Exome Sequencing test). To top it off, you require an authorization (taking up to 72 hours and causing a missed dose or two) of the medications Case has been taking for months and still may charge me full price. I miss Medical Access. You are a thorn in my side. I can't help but think you are the start of an even more terrifying "health care bill" that could potentially be detrimental to say the least. However, I am thankful you are covering all of his procedures and appointments so far. Please don't stop doing that. You are not impossible, just difficult. But at anytime, feel free to go away and have Medical Access step back in your place. End rant.
I am aware that regardless of how difficult you are or how many headaches you give me, in the end, "everything is going to be okay".

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