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.

Friday, August 24, 2012

Hard Questions.

The hard questions..I don't like them. I don't like asking them or hearing the answers. I'm not sure what's worse, answers to the hard questions or... "there's really no way to tell right now." Today was a long day. 8 total hours of appointments, one surgery scheduled, more possible reasons to operate, two doctors we never met (plus some "doctors in training"). Talks of an MRI, adding a new specialist (or two), statistics, hormone treatments as early as January, what's next if the vomiting continues, etc., etc. Case's Gi appointment was full of hard questions. The Dr. thought the GJ tube would be our answer. He really thought Case's weight would increase well, the retching/vomiting would stop and the pain/discomfort would stop. He was wrong and so was I. There is no reason why Case shouldn't be gaining weight on 880 calories in 24 hours. What is happening with his stomach is not an intolerance problem but rather a motility problem. He is switching meds, and has me venting Case (VENTING: When you attach a long tube with a bag at the end to bring extra bile, fluids and gas up and out of the stomach). I safety pin this vent bag to the outside of Case's pump pack. So, little man is attached to two tubes and two bags for 22 hours. Hopefully the venting, Med switch and calorie increase will help stop the vomiting/retching and add the weight. I really don't want to go onto "the "next step in the food battle". Anyway, the rest of the appointments went pretty well. It just turned out to be a long day. At one point I had a women say she didn't know how to entertain her child for two hours during his one appointment that one day (Oy). At another point, I saw a little boy that has been in the RMH for months and months... I felt like we were "home."  Case has a fan club in every clinic. He got a new fire truck from our Care Coordinator, lots of smiles and lots of hugs. Everyone was wonderful giving us pats on the back, snacks and drinks. It's like we went to visit some old friends. All in all it was a good day. Too much info and not enough caffeine but still a lovely day with my favorite boys.:)

 Snacks and drinks from the doctor.

 The remote control fire truck Case's care coordinator gave him.:) 
 The decoration on our Ronald McDonald House door. How appropriate.;) 
Venting on the go!

1 comment:

  1. Wow, what a day...His smile is contagious. I am glad you are greeted with sweetness...Bitter with sweet makes it a little easier to swallow...thinking of you!