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.

Saturday, January 7, 2012

Give thanks in all circumstances...

“Out of suffering have emerged the strongest souls; the most massive characters are seared with scars.” ~ Khalil Gibran
Hard to think of Case as a massive character. But he is.
He's had some rough nights lately. I would wake up to him screaming and sometimes retching. Case can't vomit because of the Nissen wrap. 

RETCH: noun: an involuntary spasm of ineffectual vomiting; "a bad case of the heaves"
It's no fun. He was having a hard time tolerating his night feeds. He wouldn't eat much during the day causing me to run 10-11 hour feeds at his max of 39 mls (a little over an ounce) per hour. On top of that his pump broke at some point and was putting extra into him. It was only a few extra mls per hour but was not good. We got his pump replaced which lessened the times he was waking to retch but he still couldn't handle the long feeds at max volume. Sometimes the retching would get so bad, I would open his stomach tube and let him "vomit" out of the tube. Gross, I know but it was necessary to release the pressure on his tiny belly. This all was very difficult for me. It's hard enough to have your child vomiting night after night but in a way this was harder. It only took one night of retching after the pump was replaced for me to call his surgeon. I left a message and got a prompt return phone call from the surgeon himself. I love Dr. Scholz. He is an exceptional doctor and has general care for Case. I told the doctor we were having problems and asked if he thought bolus feeding Case whatever Pediasure he doesn't take during a feeding was a good idea. He said yes. Bolus feeding is when I connect Case to a short tube (about a foot and a half long) with a syringe attached to the top. I pour Pediasure into the (open) syringe and hold it for 10-20 minutes until all the Pediasure has entered his belly. This is wonderful. It allows Case to get the appropriate amount of Pediasure during the day so I can run shorter feeds with less mls at night. It really takes the pressure off of me and so far the retching hasn't occurred (through the night) .I do find myself worrying sometimes about dumb things like, "What if he always has the Mic-Key button in?" or "What if he stops eating by mouth altogether?". Worrying has never bought any good, only harm. It steals my peace. I don't know what the future holds for Case physically but know that Jesus does and only wants the best for His sweet baby.

Jeremiah 29:11For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. <= This happens to be one of my favorite verses.

Isaiah 26:3 You keep him in perfect peace whose mind is stayed on you, because he trusts in you.

Philippians 4:7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

“Do not fret—it only causes harm.” Psalm 37:8b

1st Thessalonians 5:18
give thanks in all circumstances, for this is God's will for you in Christ Jesus.

Case hooked up to a day bolus feed.
Case's nurse Jenny still comes to our house twice a week to check him out and get his weight. She is fabulous.:)

1 comment:

  1. Take one day at a time...that's my new motto!