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.

Monday, February 13, 2012

The good, the bad and the yucky.


When Case was tiny and in the NICU I knew that if he didn't eat and grow he would get a G-tube placed. I was relieved that he was sent home tube free. I don't know why the G-tube made me uneasy back then but it did. Maybe it was the unknown of it all.

Well, at age 11 months we bit the bullet and he got the dreaded tube. After 11 months of forcing, begging and pleading with him I stopped fighting the inevitable and buckled up for the G-tube journey. I have to say, I am very thankful for it. Without it Case wasn't thriving enough.  He was loosing weight and looking sickly. He now is gaining around a pound a month and has filled out nicely. The G-tube is a wonderful gift that has enhanced his life. That's the good.

The bad is that what he eats by mouth has dropped significantly. It's almost like he knows the eating by mouth is hard work for him. He'd rather just sit and be fed through his trusty tube Also, with feeds as frequent as they are he is rarely hungry. Some day down the road we will start focusing on feeds by mouth but for now we rely on his tube to sustain his beautiful life.  Oh and one more "bad". Clothes! He can't wear those cute zip up pjs and it's a pain in the butt unbuttoning onesies all the time to hook him up to feeds. A friend of mine and I are thinking up some ideas on how to put "Mic-key pockets" on his clothes.;) I'll keep you updated on that.:)


So now, for the yucky. If I got a dollar for every time I poured Pediasure on my lap, spilled it on the floor or forgot to close the medicine port I'd be a millionaire. One time I forgot to close the medicine port (a little "hole" with a cap at the end of the G-tube to put his Meds in) and his Pediasure leaked all over the crib. I checked on him in the middle of the night because he was crying but just patted his back and didn't notice it was open. By morning, him and his bed were covered in the "feed" thar was suppose to be in his belly. Poor baby. Also, if I'm not careful (which, generally...I'm not) I end up getting stomach juices on me by forgetting to close or clamp something. Also, we had another accidental Mic-Key button yank out last week. This time there was no need to rush to the ER. It has been long enough that I can now place new buttons on my own. Just because I know how to place a new Mic-Key in an emergency, doesn't mean I want to!;)

All of the bad and yucky aside, I have grown to love his Mic-Key and am forever grateful for that life-saving device.;)


It turns out there is a feeding tube awareness week! I just missed it! It was February 5th-11. I suppose it's beter late then never.;) I have listed some links to some resources if any of you are interested:


http://www.feedingtubeawareness.org/
http://www.bellybuttonsandbelts.com/ I plan to order Case some of these soon.:)
Really cool "tuby jammies".


No comments:

Post a Comment