Sunday, February 9, 2014

Feeding Tube Awareness Week 2014 - Why the Tube?

To kick the week off, I’ll start by talking a little bit about why Aidan has a feeding tube.

I’ve told this story lots of times, but I think the best place to point you is this post – nearly two years ago.  We had been dragging our feet for so long, hoping and trying to convince ourselves that something – anything – would work.  That this was an awful dream, and we’d wake up and find that Aidan suddenly remembered how to thrive.  That the previous six months of elemental formula and feed refusal and weight loss and tears were some kind of joke.  That this wasn’t really the life we were living.

Talking helped.  And we talked a lot.  We talked with his doctors, and his nutritionist, and friends, and family.  Deep down, we knew we just couldn’t stand by and do nothing anymore.  We felt like we were watching him slowly die.  It sounds dramatic, but most days my 15 month old was drinking no more than four or six ounces of formula.  That’s well under 200 calories on a good day. 

So that’s how we decided that the feeding tube was the way to go, but I guess it doesn’t really help explain how we got there.  The short version, if there is such a thing, is that Aidan has such severe food allergies and a rare gastrointestinal disorder called Eosinophilic Gastroenteritis that he literally cannot eat food. 

I’ll spare you the details on Eosinophilic Disorders (that’s another discussion for another day, and I’ve written a few posts on the topic that you can check out if you’re curious), but when children like Aidan can’t eat real food, they have to eat medical foods – which are similar to baby formula.  These medical foods taste and smell pretty awful, and while lots of kids drink them (to my ever-present astonishment), Aidan won’t.  It’s not uncommon for a child like Aidan to need a feeding tube because he either can’t or won’t drink enough (or any) of these formulas.

In closing, I’ll reiterate what I say every single time someone asks me about the tube.  It is, by far, the best decision we have ever made.  I truly believe that it saved Aidan’s life.  It doesn’t define him – it just a part of him.  I hardly remember him any other way.

This is Aidan's 2nd Tube - his PEG.

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