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, April 14, 2012

Information overload.

Case had his appointments Thursday. First was Dr. Schneck, the senior surgeon with urology at Children's. He's the surgeon who did his surgery on March 2nd and will do the next 3 surgeries on his boy parts. He said everything looks good and is lowering his "family jewels" ;) on July 9th. We were told to pack a bag and leave it in the car. So, it may or may not be out patient. Next was Dr. Ruldolph with GI. I love him and he loves Case. He asked how things in the feeding area are going, not great was my answer. Case has been vomiting and retching up to 12 times a day and sometimes through the night. He seems uncomfortable after most feeds.  He's showing a little interest in taking things by mouth but has a very hard time swallowing. He lost weight. Not a huge concern but still not ideal. Dr. Ruldolph is checking him for soy and lactose allergies. He also ordered an upper GI for April 30th, a swallow study for June 21st and switched him from Pediasure 1.5 to Pediasure Peptide 1.5. Here's to hoping somethings get straightened out so we can start getting him back to eating and drinking by mouth. Next was Endocrine. Nothing exciting there. He's small (duh;), they will give him growth hormones when he is 3 if needed. They are running some more chromosomal tests soon and want to see him back in August. Last we visited the lab. I've learned to request Michelle from the IV team. She is allowed to and comfortable with taking blood from his head. Case is a "hard stick". For a long time the phlebotomists would stick his arms, hands, legs and feet with no luck, they aren't allowed to stick his head so they would call a member of the IV team up to do it for them. Now we just get the IV team right away.

All and all our boy is good. The biggest hurdle in front of us right now is his feeds. Poor boy is throwing up so much Lainey runs for a towel as soon as he starts coughing and retching. She stands with a towel under his chin and catches his vomit until he is done. He doesn't throw up a lot at one time because of the Nissen but I would love to get the vomiting under control.
Case from that day.:)

5 comments:

  1. I love the new photos. I hope you can find the solution to his feeding issues soon.

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    1. Thanks, Lisa. We were suppose to get the new formula yesterday but the feeding company shipped the old formula so we'll get it monday. I hope it makes a difference, if not there are lots of other tests being done soon. I love the pictures too. Do you recognize the onesie?:)

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  2. Hi Liz,
    So jealous that you got to hang out with Lisa. :) She and I are CDH mamas but have never met. I certainly understand that bond when you meet another mama who really gets it.

    I am happy to get updates on your amazing Case Daniel. You are a brave, strong mama, Liz. Hugs to you.

    Corinne
    Mama to Samuel.

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    1. Hello Corinne!
      Lisa is so cool. I'm glad we got to meet up. We should plan a three way meet.:) We could all do dinner. Wait...you live in Canada?! That may be tricky. Ha.

      I also like keeping up with sweet Sam. He is too cute. I'm glad to see he is doing well.

      Liz

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  3. They say the road between friends is never too long. I'm sure the two of you wouldn't mind a road trip with all your kids in tow LOL!

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