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, March 2, 2012
Today was Case's second (and not last) surgery. I started to feel pre-surgery jitters yesterday. I thought his surgery was scheduled for 1pm today. About 6:30 last night the surgery department called to tell me different. Turns out his surgery was at 8:50am and his arrival time was 7:15. That meant we needed to leave home around 4:30am. Dan worked half a night then we headed to our second home. Once on the road I felt better. Jitters left, peace came. This special boy needs a strong momma and that strong momma (usually) is me.:) Every thing went great! The surgery totaled 3 and a half hours (crazy, right?). After surgery we talked with the doctor. All went well. Parts of what needed fixed are fixed and other parts will be fixed in 9 months or so. Could be 2 or more surgeries. Case was admitted to a room and is resting well.
I'll tell you what, I fell even more in love (if that's possible) with this AMAZING boy then ever. When I took him back to the OR for anesthesia he was wide awake and in good spirits (last time he was sleeping). They had me hold him on the table while the put him to sleep. He cried hard. It took a little longer then I expected (maybe a minute or two) for him to go to sleep. When I left I said a little prayer for him and heard, "I got this". :) peace immeadiatly overflowed within me. He's got this. There is nothing to worry about.
You keep him in perfect peace whose mind is stayed on you, because he trusts in you.