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, November 24, 2011
Case's surgery went well! He got the g-tube and nissen wrap. It lasted about 2 1/2 hours. He has been doing well. A little out of it. The medication makes him sleep. He will start formula in an hour. He had Pedilyte through the night. They are taking things slow so his tiny belly handles it well. But he is a real trooper! Looks like we may go home Saturday as long as all goes well!:)
Tuesday evening was rough. Yes, me "the strongest women in the world" has weak moments.;) It is hard for me to give up. I still like things to go as planned. I had no trouble with bringing Case for surgery and staying till he is recovered even if that meant spending Thanksgiving here because that was the plan. Well, when they brought Case to a double room not a private room I was a little bothered but his roommate was a quiet 3 year old with a nice family. Okay. I could handle that. New plan. No biggie. At about 11 pm plans changed again. That boy went home and they brought a noisy, needy baby with an obnoxious beeping mechine in and HIS mother had the nerve to complain about sharing a room. I immediately judged her. I started a downward spiral that usually ends in me being completely miserable, beside myself in torment. I had to make a choice. Fight for control or give God the control (which is harder said than done). At some point through the night I decided His way is better then mine. It's not comfortable being "out of my element" but the inside peace that comes with trusting Him is a beautiful feeling. :) Oh and by the way, the mother next to us just needs love.