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, January 27, 2012

So thankful.

So, Case had a cluster of appointments and blood work yesterday and today. We arrived at the Children's Hospital yesterday morning. Our first appointment was in the feeding clinic. We met with Dr. Belest (she is Case's new pediatrician here at Children's. Anytime he is having any kind of trouble or I have any questions I can call her and she can help me or direct me to who can.:). Case's speech pathologist, Heather, an Occupational Therapist, a Behavioral Specialist, Case's nutritionist, Stacy and an amazing nurse named Georgia (I LOVE HER!). The feeding clinic seemed very productive. They changed Case's feeding schedule to 5 tube feedings a day and no night feedings. I will run these feeds through his electric pump for 30 minutes each. I have a feeling some days it will feel like all I do is feed him but that's okay, it's my job and  I've got the best job in the world! It will be nice for Case to have a break from feeds through the night. We are also switching him to Pedisure 1.5 (it has more calories). We are hoping the retching decreases and eventually stops with medication and this new schedule. After that we had a 20 minute break for lunch then went to get him an Echocardiogram. That took 45 minutes and he fell asleep towards the end it was so sweet. We then went straight to a genetic's appointment. That went well, they are doing more tests for syndromes (surprise, surprise:). Genetic appointments always last a long time make for a long day. We stayed at the Ronald McDonald house last night and are staying again tonight. We met with the surgeon this morning. I changed his Mic-Key button, they took a sutcher out that was accidentally left in during surgery and answered my questions. We went straight to an appointment with Dr. Ruldolf (from Gastroenterology) and then to the lab for blood. It took a couple sticks and two nurses to get the blood they needed. After all of that Case is doing well but seems a worn out. He is so sweet and it was great to see a lot of the doctors, nurses, phlebotamists and all the other people here that love him.

Last night around 9:30 Case was really cranky and not going to sleep. When Case is that cranky I can't hook up his feeds because the crying combined with the continuous Pediasure will cause severe retching. I need to start feeds around 9pm so that they are done at the right time in the morning and don't interfere with the day feeds. I was sitting on my bed slightly discouraged with his crying and immediacy realized how blessed I am. Last year at this time Case was still an impatient. I longed to bring him out of his room and here at the RMH with me. I wouldn't have minded spending 100 nights here if I would have been able to have him here in the room with me. Last night I was so thankful. Thankful for Case. Thankful to be his mommy. Thankful that this is the journey I'm on and not another. Thankful to hold him here in the room even thought he was screaming. I was and am just so thankful.

2Corinthians 9:15 Thanks be to God for His indescribable gift!

 In the waiting room.
 Not so sure about the echo he is about to get.
 Waiting for the Genetic's doctor.:)

In the big "living room" on the top floor of the RMDH. He LOVED that car!!

1 comment:

  1. Awe, Case gets to play in the penthouse :) He gets cuter every time I see him.