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.

Sunday, June 24, 2012

So far, so great.

Case has had GJ feedings for 48 hours straight. I have to say it's going great. He doesn't mind being hooked to continuous feeds and is tolerating them fantastically! I am moving the rate from 25 mls an hour at 24 hours to 30 mls an hour for 20 hours. He is a pump free mam from 5pm till 9pm tonight.:) He has retched a few times when he ate a piece of pretzel or peach. His swallow study showed a heightened gag reflex causing him to gag, retch and sometimes vomit when he eats most solid foods. Honestly, if this is the worst thing we deal with in the feeding world, then good. It sounds like it can be desensitized with therapy and the OT (you've got your work cut out for you, Nicole;). Since the GJ placement Case has been drinking and eating some! He had 10-15 bitty bites of yogurt without any problems today! Yay! And his new found love is green Gatorade (he must know his Miss Jane drinks the same stuff;). His appointments went great! I will update you on those later but for now...the big guy is (hopefully) getting bigger and doing FAB on this new journey called the G-freakin'-J.;)

I know, the sippy is pink but desperate times call for desperate measures.;) When a tubbie wants a drink you give him a drink in whatever is close by!

1 comment:

  1. SO good to hear!! Hope it continues to go well and he progresses without too many back steps!! Praying for you!