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, August 16, 2015

Let Him Live.





Every year since my husband and I  got married, we've traveled the 8+ hour trip to spend a week at our favorite beach with extended family. 
We've done it with nursing babies, teething babies, potty training toddlers, motion sick preschoolers, a tube fed baby but never (not until this year) an IV dependent, medicine needing and tube fed 4 year old that wakes up multiple times a night sick and in pain. 
When Case got his central line in January, I can honestly say I was hesitant taking this yearly trip. 
When he then landed in the hospital 5 times in 5 months this year with infection, low platelets and various other problems, I was convinced we shouldn't go. 
All we had to bring. Things I couldn't just pick up at Walmart if I forgot it.....The billions of bacteria I was sure we're just waiting to crawl in his line...All of it scared me and I'd consider myself one that isn't easily fearful. It would have "just been easier to skip the trip". 
Then, during one of our April admissions I talked to one of my favorite Drs on his Intestinal Care team. Long story short, she said to "let him live". Told me all the precautions. He couldn't swim but he could splash once I cover the crap out of the line and dressing. 
It was those words, "let him live" that hit a feeler deep in my heart. 
Yes, we'd have to scope out the nearest hospital. Yes, there was a chance he'd wind up life flighted back to PA with infection, a broken line, etc., etc. (I thought of every worse case scenario). 
Truth is, it would be easier to keep him home. Heck, it'd be easiest to make him a bubble boy! But we didn't. Not because we're irresponsible or selfish but because we need to "let him live." 
In January of this year he was diagnosed with intestinal failure on top of his dozens of other diagnosis'....and the reality is, we don't know what tomorrow brings. 
We hope to give him every opportunity possible to be a boy. To explore and enjoy life outside the four walls of the hospital. 
Is it easy? Heck no. It's hard work! There are tubes and pumps. Puke and medication. 
Just a day trip requires so many supplies and medicines, syringes and stops but this summer was the summer we "let him live."
From the beach to fishing and amusement parks, Case and our little family lived in the moment and were blessed to enjoy the summer together. 
We're there hospital trips, a broken central line and other shenanigans? Yes. Was it because I was irresponsible and not careful, no. It's because this new life, this crazy journey is full of unknowns but those unknowns won't stop us from "letting him LIVE!" 



4 comments:

  1. Have Case's Dr's ever mentioned a Port-a- Cath which is less infection risk, completely understand the skin and he'd be able to bathe/shower and swim normally when the Port is not accessed?
    A Port only has to be accessed when not in use x a month and if in use can be accessed for up to 5days at a time.

    When not accessed you can't even tell the person has one.
    I receive a 1x weekly IV Enzyme replacement infusion at the hospital in addition to many surgeries a yr (7 so far this yr, another Weds) and my Port is always used for these to. My Port is also used for all labs including my weekly/bi-weekly IN for blood thinner level.
    In 4+ yes w this Port I've never had an infection despite the weekly infusion and over 40 surgeries including 2 open heart surgeries and numerous heart procedures during that time..
    Maybe an alternate, safer option ?
    Best wishes Case!

    Erica
    www.rarelydefined.blogspot.com

    ReplyDelete