‘Food’ for Thought

The Feeding Tube Awareness Foundation is celebrating its annual Feeding Tube Awareness Week® from February 10-14, 2020. About half a million children and adults in the United States alone rely on feeding tubes, a number that is expected to increase. Feeding tubes are not just for those at the end of life; they provide necessary nutritional support for children to live, grow, and thrive. 

The mission of Awareness Week is to promote the positive benefits of feeding tubes as a lifesaving medical intervention. The week also serves to educate the broader public about the medical reasons that children are tube fed, the challenges that tube feeding families face, and what it’s like, day-to-day, having a child who is tube fed. Feeding tubes make it possible for those unable to eat or drink enough on their own to get the nutrition and hydration they need for life. 

Want to get involved? Visit https://www.feedingtubeawareness.org/

This particular Feeding Tube Awareness Week comes upon us as our darling Kieran is gearing up for navigating a whole new level of “tubie” life. When I posted during FTAW last year, I shared a bit about Kieran’s tube story and tried to briefly explain what we understood, as of that time. Much has changed since then…

Within the past 5 months, Kieran has been hospitalized 6 times (4 of them requiring surgery), the vast majority of which were due to complications stemming from feeding tube dependence caused by his neurologic condition. Unfortunately, “tube life” is Kieran’s only mechanism for receiving nutrition and medication. Following extremely careful thought and deliberation, we embrace the 2020 Feeding Tube Awareness Week amidst a new “tubie journey” that’s coming for Kieran… bidding farewell to his Gastrojejunostomy tube!

In just a few short weeks, Kieran will have surgery to place an Omega-Jejunostomy tube. He will now have two extra belly “buttons” — a regular Gastrostomy tube, and his new “OJ” tube.

Our family has never underappreciated how incredibly lucky we are to be able to receive medical care for Kieran from some of the best facilities and physicians in the country. In fact, Kieran’s [amazing!] surgeon published a 2017 article for the American Academy of Pediatrics that discusses the difference between Gastrojejunostomy tubes and Omega-Jejunostomy tubes. If you’re interested, check it out here

Beyond ultimately being able to change out Kieran’s tube every month AT HOME myself (and by “myself” I really mean “through the help of his wonderful in-home nurses”), this avenue might actually allow Kieran to eventually receive bolus feeds and get up to four hours at a time off his feeding pump, more than once per day. You read that right — FOUR HOURS AT A TIME, MORE THAN ONCE PER DAY!! Without his backpack and tubes in tow, he can truly do anything (well, mostly anything) that his precious heart desires! [minus the oxygen situation] Kieran could play soccer; join karate; take swimming lessons; heck, he could simply just lay flat for a while without someone having to intervene. 

The peanut butter to my jelly.

The peas to my carrots.

The fortune to my cookie.

Life is full of lemons, but Kieran is our “main squeeze” that takes away any possible bitter stopping us from enjoying all things sweet

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