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, October 19, 2012


So, yesterday was a long day. I got a call from a receptionist in Neurosurgery Tuesday and they wanted to see Case at 8:45 yesterday already. Dan had work so Case's wonderful nurse came along. As we were packing him up in the car his GJ tube got pulled out. Only a CHP doctor from Interventional Radiology can put a new one in so we were in luck! We were already planning on going there.;) A short one appointment day turned into around 5 hours at Children's. The Neurosurgeon said the brain abnormalities are not related to the tethered cord. They are a whole different issue but he didn't seem concerned. He'll keep an eye on them and may need to fix his Foramen Magnum (the hole that his spinal cord goes though is too small) via surgery but only time will tell. He also said releasing the cord won't help with any of his digestive issues or cure the vomiting at night. Because, he's sure I'm aware of the fact that my son had "MANY issues that aren't all related". Yeah. I'm aware... He sent us up for pre-opp blood work and will have his scheduler call to set up the surgery within the next week or two. Post surgery he will be an impatient 4-5 days and will se]pend 24-48 hours flat on his back without sedation (I wonder if the nurses will mind me having a flask of straight whiskey to get me through those first 48 hours?:).  I have to say, I'm pretty sure you could feel my disappointment when the dr said the only thing releasing the cord will do is help with bladder control, help his toes straighten up (they are bending in towards his arch) and fix his walk (I was unaware that it was broken...;). Just between the hundreds of you and me, I'm still holding onto hope that this will help stop his continuous night time vomit...if the GI has seen that happen with other patients, maybe Case will luck out. So, after the meeting with the less-than warm and fuzzy neurosurgeon, ten vials of blood being pulled out of little guy and a quick sandwich Jane, Case and I headed into IR to get our big guy a new tube. That went well. All in all yesterday was a good day with great people. I was able to see my tiny NICU friend and my RMH-BFF, Lisa Razza. I fell asleep at nine and woke up when the nurse knocked at 10:15. I felt like after almost 22 months of this it was apparent that I can't "expect" anything. That things will go as they go and I'll just keep "forward marching". Sometimes I'll trip and sometimes I'll nap but forward we'll go towards the main goal of raising our very special Case exactly the way he needs raised. With lots of love, patient and of course, coffee.;)
"His" name tag was a hit.:) One of the doctors in the elevator said he was pretty sure he wasn't Elisabeth and he was POSITIVE he wasn't a parent/guardian.:) It was cute.
His old GJ.

1 comment:

  1. Thinking of you. Don't let the doubt of one doctor stop your hopefulness. I believe, somehow, the nights will get easier for Case! AND I know the days will continue to provide joy to everyone he meets!