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, April 29, 2012

Of pediasure, poop and prayers.

Case has been on the new Pediasure Peptide 1.5 for about 13 days now. The plan is to take a 2 week trial on it before switching him completely. Here is a short list of the Pediasure Peptide 1.5 pros and cons compared to the Pediasure 1.5 he used to be on.

*Vomits and retches seem to be less then before (I think). Now he has around 3 to 5 (sometimes more) vomit and or retches in 24 hours instead of 7+.
*It comes in a bottle instead of a can. Not a big deal. It is more convenient though.
*He is not constipated any more and we stopped the med for constipation.

*Diarrhea. That's a big one. If it continues, he will be switched again. It seems like every day it gets a TINY bit better but sill diarrhea like.

So, That's that in the poop and Pediasure department, on to the "prayers". Something really cool happened today that I thought I'd share. Case started to cough and retch so Lainey (his 3 year old sister) ran to grab a towel. As you may have read in a past post, this is nothing new. She often catches his vomit in a mommy like fashion but today was a little different. I stood back a little bit and just let her do her duty. As I was watching I heard mumble mumble and "..and help feel him better. Amen". She was preying for him. SO CUTE! That was a great Mommy moment that I was blessed to experience.

We head to Pittsburgh Children's Hospital tomorrow to visit the Cranial Facial clinic (there are some possible concerns with the structure of Case's throat). Hopefully there will be some answers on why he has such trouble swallowing. He will also have an upper GI. This will show the doctors if his Nissen wrap is still intact or not and will also (possibly) give him some answers on why Case vomits/retches so incredibly frequently. Poor guy, I can't remember the last time he went a whole day without vomiting. That's all for now. Thanks for caring.:)

 Case and Lainey.
Case and his cool new feeding adapted shirt from Sweet P Styles.

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