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.

Wednesday, June 20, 2012

"This is not the end of the road."

"This is not the end of the road. You don't want to see the end of the road...I have, and it's not pretty"-Dr. Ruldolf's response to me saying, "I just really feel like we are at the end of the road..." We're doing it (by we I mean Case). He's getting the GJ, this Friday. It's not the end of the road but the beginning of one. A new adventure. The GJ will help him grow. The food running straight into his intestines and bypassing his stomache means that it will absorb correctly. And if all goes well, the vomiting will cease, and Case will steadily and painlessly grow. This GJ will be put in at radiology while Case is awake. They will take the Mic-key button he has now out and put a new something (not sure what it is called) in. It will have 3 ports. One that feeds food to the stomache, one that feeds food to the intestines, and one to fill the balloon. If it gets ripped out, we can not put it back in. We will drive to Pittsburgh, and they will put it back in. The original placement is an out-patient procedure and will be done soon.

When I got off the phone yesterday with Dr. Ruldolf, I fought sadness. Almost like a sadness from failure. A failure to get him to grow. Well guess what, ladies and gentlemen, this is not my child, and I am out of control! (strong statement, I know. Please, feel free not to badger me about it but wait for my reasoning...) This baby was made by God and for God (as were our three girls). He is a loaner. Given as a blessing to earth. I didn't decide his future or his present, God did. And despite what it looks like, it is EXACTLY what God intended for him. I am out of control. I have tried countless hours to make the "food/child" relationship normal. But, guess what, it's not. And guess what else, that's okay. Case is alive. For that, I am forever grateful. Case is thriving and soon (with the help of a GJ) will thrive even more. The point is that it doesn't matter how he is fed but that he is fed, absorbs it and isn't physically ill afterwards. The feeds will start out at 25 mls around the clock. Yes, Case will be fed 24 hours a day. Not an easy task keeping a feeding pump, bag and whatever else attached to a toddler all day (and night) but Lord willing, we will be able to give him breaks from feeding down the road (a few hours here and there), but for now it will be continuous. After I got off the phone with the doctor, I called Case's feeding supply company and talked to a very lovely lady. I believe her name is Eenis(?). I  told her my son is getting a GJ and is very active. I asked if maybe (just, maybe...) she had a small pump backpack laying around. She hung up to see and called me back. "You are in luck! I have one, just one in the whole building! And I snatched it up! I'll ship it to your sweet boy in the morning." I told her I loved her (I was in rare form trying to process this new path) she laughed and told me I'm on a long road and so is my little guy. She said she imagined it was hard and sweetly comforted me. God bless Eenis for her encouragement. She has no idea how much she meant to me. Truth of the matter is, a GJ is not the end of the road or world but a new beginning and a new path that Case will not travel alone. He is a very special Case and is loved by many. For that, I am thankful. 




 He likes his big boy pump pack!
My Hero.

4 comments:

  1. Thanks for sharing Liz. I've been praying for you and your family. You are an inspiration. Keep fighting the good fight of faith. And give Case a kiss for me :)

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    1. Melissa Eilenberger.... not sure how to get my name there instead of 'unknown'. :)

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  2. Thanks, Melissa! And thanks for clearing up the "unknown".:)

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  3. Wow, the journey does not pause but continues at a steady pace for your family and Case. I am so glad you have helpers that bless timely along the way! Case is God's and his purpose is GLORY. I love your heart and willingness to deepen and widen a long this road chosen for you!! I will pray for gifted, spirit filled sojourners to encourage and steady you when you are too weary to take one more step. Your family has my heart!!

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