Monday, February 16, 2015

Feeding Tube Awareness Week 2015

In a perfect world, I would have had a lovely post queued up every day last week, in honor of Feeding Tube Awareness Week.  Didn't quite happen. 

Each year, the Feeding Tube Awareness Foundation suggests daily talking points and activities throughout Feeding Tube Awareness Week - I'd really like to take the opportunity to share my thoughts this year.  I'll try to be brief, I totally almost promise.

Why is Aidan tube fed?

What a question!  I'm sure I've tackled this one before, but the short answer is that he doesn't have any safe foods to eat, so he needs to drink a special hypoallergenic formula.  The formula doesn't taste good, and Aidan started refusing to drink it when he was about a year old.  We spent most of our waking hours begging, pleading, and trying to force him to drink even the tiniest amount.  I can remember just before he got his first feeding tube, taking stock of his intake and realizing he was getting about 4 ounces of formula in a day.  Four.  Think a child can grow/thrive/develop on 120 calories per day?  I don't.  And he wasn't.

Things got more complicated as he got older and we learned more about his medical issues, but since I totally almost promised to be brief, that's the short version and I'm sticking to it!

What does this week mean to us?

More than anything else, Feeding Tube Awareness Week means Getting the Word Out.  The more we all talk about it, and the more photos we all share, the less noteworthy it becomes.  This is why I love small children - they ask their questions, think for a moment, and then say - Okay!  And it's just accepted.  It's him, it's part of him, and everyone's fine with it.  I'd love to see the rest of our society get there too.

Addressing the Myths

There are so many myths.  I'll pick a few of my favorite.

Feeding Tubes are for the elderly/extremely sick/very fragile.  Feeding tubes are for people who need them - period, end of story.  Some of those people are elderly, or sick, or medically fragile.  Some of them are young and pretty healthy, but need more intake than they can handle orally.  A lot of them are in between - children and adults with medical issues that, for one reason or another, need a feeding tube.  Only slightly different from the rest of us, children and adults with various medical issues that don't happen to need feeding tubes.

He looks way too healthy to have a feeding tube!  I'll take this as a compliment, and pass it along to his medical team.  We're all working really hard for exactly this end result, so thanks for the positive feedback!  Just as I don't stop putting gas in my car when I notice it's running really well, I won't be stopping tube feeds based on your feedback that they seem to be working.  That would be crazy business.

My child is too active to deal with a feeding tube.  He couldn't possibly handle continuous feeds.  I know, this one sounds so true.  Actually *getting* a feeding tube for the first time sounds like the most life-limiting thing ever.  How will anything ever be okay again?  And when you're dealing with the reality that your child will be on continuous feeds (Which are not always 24 hours continuous - for example, we once had an 18 hours on, 6 hours off schedule for Aidan), it feels crushingly like he'll never have the life that a child deserves - but it's just not true.  My own crazy 4 year old is now a 24 hour continuous feeder, and he attends a typical Pre-K and takes Martial Arts three times per week.  He's also done Gymboree Classes, Soccer, and has been safely fitted to wear a rock climbing harness while wearing his feeding pump in a backpack.  Tubies swim, run, and roughouse like any other kid.  And, for what it's worth, an actual 24 hour continuous feed schedule is really uncommon. 

Bring him to my house, I'll make him drink that formula.  Bring your face to my house.  I'll smack it. 

I can't do this.  You totally can.  It's overwhelming, yes.  It's maddening.  It's exhausting.  But so was new parenthood, and you're doing fine there.  You don't need to be a doctor or a nurse to care for your Tubie.  You will know your Tubie better than any doctor ever will.  On your twentieth admission to the same floor, the same doctors will start asking you what you'd like to do next.  You are going to be the world's leading expert on your Tubie, and don't you forget it!  You've got this! 


You may have noticed, Education is kind of a personal mission of mine.  I truly believe that if more people actually understood a day in the life of a Tubie, the world might be just a tiny bit better off for it.  At the very least, it would be more mindful and accepting of this particular difference.

My favorite educational tools, since I focus my efforts on my son's Pre-K peers, are the My Tubey books and Tubie Friends/Mini Buddy stuffed animals.  Feeding Tube Awareness provides some awesome printable guides, which I like to have nicely printed and coil bound for new teachers/caregivers, and nothing beats being able to bring an actual spare tube to show people what's what.

When it comes down to it, people are visual.  Being able to see and touch things goes a long way toward demystifying them.

Celebrate Success!

When Aidan was tiny and new, like every new mom, I promised him that I'd give him everything he needed.  Food.  Shelter.  Love.  Fisher Price.  You know, the essentials.  As he grew (or didn't...), I realized that his body was failing him and preventing me from keeping that promise.  I made the only decision I possibly could have - the one that gave him everything.  Without nourishment and hydration, everything else is irrelevant.  This tube gives Aidan the opportunity to go out and conquer the world, or stay in and play with Legos.  Whatever he does, he's bound to succeed because of the choices we made for him three years ago.  And, you know, I think that's something to celebrate.

Feeding Tube Fun

A little feeding tube humor for you.  In our household, talk of feeding tubes is (obviously) just regular everyday fare.  Aidan knows so much medical terminology, I sometimes wonder if he's Pre-Med or Pre-K.  (Paying his tuition isn't really clearing things up any...)  Last week, we had to take our cat to the Vet for a checkup, and the tech needed to ultrasound the cat's tummy.  Aidan angrily confronted the tech, and said "No!  You stop it!  You do not check his belly with x-rays, because he does not have a tubie!"  When I told him that it was okay, the Kitty Doctor was just helping, he looked at me and I swear he rolled his eyes in my general direction and said "No, Mommy.  She's not a Kitty Doctor.  She's a GI because she's fixing up Stormy's tummy." 

Well I laughed.

Tubie Love

I love that Feeding Tube Awareness Week overlaps with Valentine's Day.  It's so meaningful and so important to us, and while it's not always easy, I absolutely love this feeding tube, because it has allowed Aidan to be the normal and healthy little boy that he is.  This is something to celebrate - to shout from the rooftops!

To spread our love this year, Aidan and I made Valentines for his new classmates.  We were happy not to have to redesign them, since he recently moved to a new school with all new friends, so no one had seen this Valentine before.  We added his TinySuperheroes card (because it's super cool and gives a little bit of background on who he is and why we didn't just hand out Ninja Turtles Valentines and call it a day), and we also gave out Feeding Tube Awareness tattoos because 4 year olds think tattoos are super awesome. 

In closing, I'll share the photo collages I made this year.  Because holy smokes, he's cute.
NG Tube - placed April 15, 2012.  Aidan was about 15 months old and had the NG Tube for 6 weeks.

PEG G Tube - Placed May 31, 2012.  Aidan was about 17 months old and had the PEG for about 4 months.

Buttons!  Aidan's first button was a G-Tube, placed on October 5, 2012.  Aidan was 21 months old and kept that tube for 6 months (with changes).  Aidan's next button was actually a GJ Tube, placed on April 2, 2013 when Aidan was 27 months old and I should have stopped counting in months forever ago.  In 2015 at age 4, he still has a GJ button.

Purely for fun.  Way back in the day, when he had a G tube, Aidan tolerated gravity bolus feeds by syringe.  Now, he's all pump, all the time.