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, June 1, 2012

Weight loss, blenderized diet and G-freakin'-J.

So, such as the feeding battle (sometimes) goes, there is no clear answer yet. No "easy route". No easy fix and no diagnosis. I took Case to his pediatrician Tuesday. He is concerned. Case lost another 4.5 ounces (in one week). In the month and 1/2  since Case was at the pediatrician he's gained (all in all) only 5 ounces. It's looking like the next step is a blenderized diet (through the tube). There is no malrotation (which sucks, I was really hoping that would be our answer). Dr. Chopra (pediatrician) and Dr. Ruldolph (GI Dr.) mentioned the possibility of giving Case GJ tube.

"A GJ tube is a radiologically inserted tube that is placed through the already established gastrostomy stoma and threaded into the jejunum in the x-ray department.
GJ tubes are used for children who cannot tolerate feeding into the stomach, usually due to gastroeshophageal reflux (GERD)."
This tube would stay in his body most the time. If the tube got pulled out we would go to Pittsburgh. We would run continuous feeds 24 hours a day (I think we would have some small breaks) instead of the 5 bolus's during the day and night feeds. The food would go straight to the intestines and nothing into the stomach. Blah. GJ's sound like no fun...BUT if that is what he needs, that is what he will get. Don't quote me on the details, I'm not a hundred percent sure exactly how this works and I am hoping and praying that if he needs, it it will work. That eventually they will find the problem and that maybe, just maybe this blenderized diet will miraculously make all of this go away..:)
Which takes me back to trust. I do trust that God is in control. That he doesn't always just make your problems go away but instead teaches, grows and blesses you along the rocky roads. I have been and continually am blessed. It's been difficult to ALWAYS trust. I cried a little in Dr. Chopra's office. I just want my baby to be okay but the truth is he is okay. He is lovely, and he is being taking care of. This is only a season, and He is stronger than any possible, terrible scenario today.

I've had the song "Your Hands" stuck in my head lately. My favorite part and the part that plays over and over:

"When my world is shaking, heaven stands
When my heart is breaking
I never leave your hands"-JJ Heller, Your hands.
*disclaimer: please do not think that I am complaining or that I wish Case were any different. I don't like seeing this sweet boy in pain and struggling to grow even a little. Today I decided to blog with my heart on my sleeve and my prayers on my tongue.  ;)







You Hands.-JJ Heller


3 comments:

  1. "Lizzy": You are a strong spiritual girl, and everyone is allowed to feel as you are! In fact, we would think you abnormal if you didn`t!
    My Niece goes through some trying times as well with her son, 3(leg issues since birth),you both come here & talk to us & tell us your feelings & questions, and it just shows us even more how much God is in control of your family`s life.
    I love you very much <3
    Stephanie

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  2. There is nothing wrong with feeling as you do AND expressing it. Someday, there will be someone reading this blog and they will feel better knowing there is someone else who feels the same way! I pray that you find the answers you seek and that the GJ tube will help Case to thrive.

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  3. There is now a 100% real food, shelf stable option for those on a feeding tube. You can learn more at justfoodblends.com,

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