We visited the cardiologist today and went to his pediatrician. The Cardiologist is from Pittsburgh but comes to the Altoona Hospital to see his patients every Friday. He is a really great guy and loves Case.:) Case is doing well heart wise and will get an echo at Children's on the 26th. The echo is to check for the PFO. He weighs 12 pounds now! YAY. As far as him refusing to eat by mouth, I had a long talk with his gastro doctor, Dr. Ruldolf. He is such a fantastic doctor! He said we don't want Case to loose all desire to eat by moth. He put him on a new medication that I give him 3 times a day 15 minutes before a feed. It is suppose to help him empty his stomach so he feels more hunger and should help stop the retching. He has been on it for 2 days and if it isn't helping lessen the retching after 5-7 I'm to call him back.
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.