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.
Friday, November 2, 2012
I'm. So. Over. It.
This retching/dry heaving/vomiting crap, well I'm over it. Case had a really rough morning. For about two hours he would start retching, which turned into a dry heaves until he finally would over come his Nissen and vomit. That was then followed by crying out in pain. He is fed into his intestines so, his vomit consisted of stomach bile and Meds. This happened quite a few times. The first time or two, I laid in bed listening to his night angle in nursing scrubs whisper to him just praying it would stop. Finally, I got up and called Neurosurgery to have the Dr on call paged. The pain reliever and Zofran they sent him home on are such small doses, I doubt they even work. As I laid on his floor while Jane gently rocked him I thought of just how over the retching/vomiting I am. At this point if he retches/dry heaves too much he could open his incision and then we'd be in trouble. Little guy needs a break. I'd like to do it for him but I can't. Poor guy was in pain from the stress his body was putting on his newly cut open back. Well, he eventually stopped and sweet, selfless Jane finally went home. Two hours later the dr. still hadn't call so I called back, got a new doctor, higher Meds and the recommendation to call his GI with suspicions of the Meds not absorbing right. This stomach crap is really starting to get to me. You see, I'm a foot stomper and a squeaky wheel. More times than not I know what's best more than anyone else for my little guy and I bust ass to get it. I've refused things, appealed things, called, and called and called the doctors on call, and have done my damnedest to get Case the absolute best of everything but this, I can't fix this. We've been trying for 22 months to get his digestive system to work right and we can't. It's been a long, puke filled road and I'm tired. I will not let this enormous hurdle steal my peace or let it fool me into thinking Case should have been born "normal" but I will continue to work towards an answer.