Zeke has guts, living on TPN with total intestinal aganglionosis

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Zeke has guts, living on TPN with total intestinal aganglionosis

This page is for Zeke, a brave boy with Total Intestinal Aganglionosis, who lives life to the fullest on parenteral nutrition. Thank you for all your support!

Zeke is a happy boy with a smile that lights up the room anytime someone interacts with him. His condition is one that will require a lifetime of medical care including surgeries, IV nutrition, nursing care and a team of doctors from around the country. Zeke may ultimately need a full intestinal transplant in order to have a chance at a long life. He was born with a debilitating intestinal disease

known as Total Intestinal Aganglionosis which is a severe form of Hirschsprung's Disease where the normal nerves that control the peristalsis did not develop leaving the intestinal tract not having the ability to absorb nutrients and not allowing the waste to be expelled. His entire colon and his distal small intestine had no nerve cells to function. He has an ostomy bag , a GTube and a Central Venous Tunneled Cath in his chest for his IV Nutrition. Zeke will have to receive IV nutrition 20 hours a day 7 days a week or he will not survive. We have a great support network of family and friends and Zeke has a great older brother Pierce who just turned 11 years old. Zeke is such a brave little guy with more guts than anyone I know. I chose the name of this page to reflect that but he also needs everyone else to have guts for him. We will use this page to provide updates, share pictures, and ask for prayers. Bill, Brittany, Pierce and Zeke Retsinas

21/07/2022

Hammond dry suit held up pretty well today.

14/07/2022

Line repair time, we made it two and a half years since the last repair. Luckily they are able to fix it and not require any surgical interventions.

20/02/2022

Tubing fun! ❄️☃️

15/07/2021

Zeke has been home for nearly a week and he’s doing great! We’re so thankful for the progress we’ve already seen as a result of the surgery and we’re excited for the next step.

Next week we will slowly start trying to introduce enteral formula feeds. The plan is to continue increasing feeds as tolerated. The benefits of enteral feeds are twofold: 1) feeding the gut helps protect the liver from the damage caused by IV nutrition, and 2) if he’s able to absorb some nutrition from the feeds then his dependence on IV nutrition could eventually decline.

He has to return to Omaha in the Fall for a follow-up with his surgical team. In the meantime, it’s all about trying to make progress with feeds. He looks and feels great, which makes us feel so happy for him!

04/07/2020

Happy Independence Day!! 🇺🇸

30/06/2020

https://www.engadget.com/heres-a-first-look-at-netflixs-cuphead-series-122911877.html

Zeke loves Cuphead, he is going to be so excited for this!

The 'Cuphead' Netflix series will have cleaner lines than the game while retaining that old-school cartoon charm.

23/06/2020

Happy 7th birthday Zeke!!! This kid has brought so much joy to this world and continues to be an inspiration to so many. He is truly incredible and such a silly goofball. He is always laughing and dancing from sun up to sun down (even when he is in pain). The world would be a better place if we all had his zest for life.

28/05/2020

Zeke lost another tooth!

29/03/2020

Zeke lost his first tooth!

19/01/2020

While at the Barrett Jackson auction today Zeke had an opportunity to practice performing surgery using the latest surgical technology. When I told him there was a real surgeon there he said he had questions for him. He proceeded to ask him all sorts of questions about surgery and how it works. It was so cute to watch him interact and how engaged he was.

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