Feeding Tube Awareness Week 2014 - Tubie Challenges, Tips, and Tricks

Try as I might, I probably won't be able to convince you that tube feeding is all puppies and rainbows.  Maybe it's because I look like I haven't slept since George Bush was President (I I don't mean W).  Maybe it's because my Preschooler is more familiar with the Children's Hospital logo than he is with the iconic Golden Arches.  Or maybe it's just that you've actually read this blog before.

There's so much to celebrate as a Tubie family - but I'm neither ashamed nor afraid to admit that it's hard.  

Emotionally, it's very difficult to live with the knowledge that your child is medically fragile.  It's a thought that never leaves you, no matter what you're doing.  My husband and I share a love of absurd post-apocalyptic television shows - think The Walking Dead.  As we watch the characters roam the zombie-laden earth, thriving on practically nothing, I can't help but think - "Our son wouldn't survive that."  During a recent snow storm, as friends and neighbors mourned the loss of electricity and heat - my only thought was how we'd go on feeding Aidan if we weren't able to charge his pump.  Our own needs for heat and food and shelter were a distant afterthought - always second to keeping Aidan fed.

Practically, though, we have hit our fair share of roadblocks.  I think they're very common - as in, Tubie families around the world experience the same handful of problems.  It's comforting to know that there's really no issue we can encounter that someone else hasn't already solved, and probably quite brilliantly.

There are so many tips, tricks, and gadgets that have made our lives easier - I wish I had the time to share them all. But here are a few - the greatest hits, if you will.  A couple of products, a couple of resources.  I always welcome the chance to talk more - please, please reach out if you have questions!

1. The Corisafe.  It deserves the coveted #1 spot, hands down.  I've blogged about them before - essentially, it's a lockbox for your tube connection that prevents tiny hands from disconnecting at inopportune times.  It's $25 insanely well spent, and they offer a 20% discount if you purchase more than 1 at a time.  They will custom make your Corisafe to fit your exact tube/extension setup.  And the people behind the scenes are pretty awesome.  Also?  It's really cute to hear a three-year-old say "Cowisafe."

http://corisafe.com/

2. Tubie Friends/Mini Buddy - These provide two really vital things.  A "just like me" friend for a child who has something outside of the norm happening with their body, AND a fantastic teaching aid for family, friends, sitters, teachers, classmates, playmates, and strangers on airplanes.

http://minibuddy.org/, http://www.tubiefriends.com/

3. Tube Pads - At the hospital, we are always given gauze, which is fine (and free) - so that's what we used early on.  It looks like this.

Gauze

One morning, I found Aidan's tube gauze-less.  O-kay.  Where'd it go?  Ah, there it is, IN HIS MOUTH.  Gag.  We don't use gauze anymore, for hopefully obvious reasons.  But a naked Tube is a sad Tube - without something around it, we get more granulation tissue (bad news) and irritation.

Totally lacking in pizazz

I told you before - all Tubie problems have brilliant Tubie solutions.  Enter the Tube Pad:

Stylish.

We love them.  We have ten zillion of them.  Primarily from SuperBellies (http://superbellies.storenvy.com/) but we also have a few from Patchwork Peddler (http://www.patchworkpeddler.com/).  A quick visit to Etsy reveals that you have options galore, and you'll pay anywhere from $1 to $5+ per pad. 


4. Exchange Groups - There are so many out there - I've found lots on Facebook with minimal effort required.  Groups of people who have supplies (extra button kits, extensions, feeding bags, stoma care items, tapes, formula, and so much more) that they no longer need - happy to pass these items along to another family in need.  I've been on both sides of this - frantically looking for supplies when our DME company was delayed - AGAIN - or looking for a way to ensure that medical supplies are used by those who desperately need them, even if I don't.  Get yourself into these groups, pronto!



5. Research & Information groups - It is so easy to get caught up in your own day-to-day and never to take a step back to see what the community as a whole is learning and doing.  My favorite groups for our particular issues are APFED and Kids with Food Allergies - each of which host an annual get-together that I'm trying to make a habit of attending.  Let's not forget Feeding Tube Awareness, too!  

http://community.kidswithfoodallergies.org/pages/community

http://apfed.org/drupal/drupal/index.php

At the end of the day, what really makes the journey easier is knowing that it's all for this guy.  He's worth it (and he knows it)!

Feeding Tube Awareness Week 2014 - How we do what we LOVE

The theme of the day is doing what we love to do.

Aidan is a 3 year old boy.  You know what he loves to do?  Be a 3 year old boy!  The most magical, amazing power of his feeding tube is the ability to do just that.  To live his life with the certainty of hundreds and thousands of tomorrows.

At the outset, there is a lot of worry over what a Tubie can't do.  It feels as though a feeding tube is some insurmountable obstacle preventing your child from doing everything you'd ever hoped he would do.  Is swimming okay?  Are sports okay?  Will daycare take him?  How can life possibly ever be normal?!

It can.  It will.  I promise.

Think of a thing your little boy has done.  Chances are good that my little boy has done it too - he's just done it without stopping for lunch.

Attending Daycare with a tube - CHECK!  Aidan's been through daycare with an NG tube, as a toddler, and now with a GJ tube, as a preschooler.  It takes care and coordination - and a daycare/preschool that's willing to work with you - but it can absolutely be done!  You know how many times another toddler pulled out Aidan's NG tube?  Zero.  Not even kidding.

Sports - CHECK!  Aidan's done soccer, rock climbing, and some pretty rough-and-tumble play at his weekly Gymboree classes. Number of tube injuries sustained?  Zero.

Water Play - CHECK!  Aidan had the opportunity to take a fresh water swim and a salt water swim with his tube while on our cruise.  No special precautions, no special considerations.  He had a blast.  Water related tube injuries?  Zero.

Having a tube has NEVER stopped us from living a normal life.  It has NEVER held Aidan back.  What it HAS done is give him the normal life he wouldn't otherwise have had.  A child who can't get enough nutrition to grow and thrive on his own would never have the opportunity to climb a wall, kick a goal, or learn to say those three precious heart-melting words that every mother longs to hear.  Every "I love you" is a gift made possible by this tiny little tube that keeps my boy alive.

Feeding Tube Awareness Week 2014 - Feeding my Tubie on the go!

The theme of the day today is feeding on the go.  I think it's probably one of the most nerve-wracking things about becoming a Tubie Family.  It's hard enough to decide to get a tube, but feeding in public means that everyone knows.


When Aidan was an NG Tubie, it was highly visible - whether we were actually feeding or not.  Where we went, he went.  Where he went, it went.  We really never fed in public in those early days, because he was still taking formula orally.  But it was definitely the most visible of his tubie times.  We embraced it with some super adorable animal-shaped tape.  My only regret?  Honestly?  That we didn't take more photos during that time.

This guy couldn't BE more comfortable in the skin he's in.

   
Things really got wild when Aidan became a G-Tubie.  We would stop and do gravity feeds anywhere and everywhere.  If you can go there, we fed there.  The Children's Museum.  The airport.  Restaurants.  The soccer field.  Disney World.  Seriously - name a place - we've probably fed there.

It was hard at first.  We tried to find nooks and crannies to hide in.  I hated the thought of people staring.  It was a whole new level of the "nursing in public" debate.  My apprehension wore off though - and I'm glad it did.  We're what I like to call "out and proud" - other parents feed their children in public every day.  Why shouldn't I?  

Feeding the Monkeys at Disney's Animal Kingdom

Lunch at the Children's Museum - no bib required!

These days, feeding on the go is a no-brainer.  Aidan now has a GJ Tube - we feed him very slowly all day long, so he wears his feeding pump in his backpack everywhere he goes.  Some people notice - most people don't.  I hope that as Aidan gets older, he's proud to teach others that there's more than one way to eat!

My best tips for feeding on the go:

• Make sure you have everything you need.  When we were bolus feeding Aidan's G Tube, we brought pre-measured containers of Aidan's formula, water, extensions, syringes, water for flushing his tube, a small dish towel, and a ziploc bag for anything dirty.  This sounds like a lot, but it really isn't once you've got your routine down.
• Ask your Tubie where they'd like to eat.  Chances are good that they aren't worried about eating in public - and you shouldn't be nervous either!
• If you need help, or have questions, or just need encouragement - ask!  There's plenty out there!  
• Hold your head up high!  You've got this!