Plague Household - Love for the Tube

Chances are good that if you're a parent, you've found yourself covered in some pretty horrifying bodily fluids.  It's just part of the gig.

A few weeks ago, a plague descended upon The House of Shields.  We later learned that it was Influenza A - I'm italicizing it for ominousness.  It took all three of us down, but Aidan was the first to fall. 

It was one of those nights.  Aidan woke up from his nap crying and feverish, alternating between begging me to hold him and begging me to leave him in his crib.  When I finally convinced him to sit with me in his rocking chair, he held my shoulders, leaned in, and threw up in my lap (motherhood is glamorous!).

I could hear his poor little tummy making some truly unholy sounds, and as I pondered the location of the nearest poncho, I realized that our beloved tube could come to my rescue.

With some quick footwork on Daddy's part, we had our drainage setup ready before the next Vesuvian Eruption.  Crisis Averted!

If you don't have a Tubie, this probably doesn't mean much to you - but we take our wins where we can find them.  It's *awesome* when you can help prevent your miserably sick kiddo from feeling miserably sick, even a little bit.  Rock on, Medical Technology!

CHOP Inpatient - Musings on Feeds

After Aidan's scary-yet-fun (?) ambulance ride to CHOP on Tuesday night, we settled into our room on 5 South and awaited a plan.  I swear, that's all we ever do here.  Wait for someone to figure out how to help him.  And in the end, it's always a patch up/send home job.

Aidan had no problem immediately falling asleep.  I, on the other hand, stayed up to panic about work and ponder what the appropriate hour was to text my boss.  Finally, I had to reach out and admit that I was here, with no access to my work laptop or phone, and would be missing several important meetings.

I hate this part.  Obviously my child is the most important thing in the world to me - but I pride myself on the work that I do, and not giving 100% does not sit well either.

Listless boy :(

Anyway - what Aidan really needed were IV fluids for hydration and gut rest.  Late in the day, we started up Pedialyte, and he finally produced wet diapers.  He really seemed to perk up quite a bit.

Toddler Problems: he's a righty.  no coloring :(

When we started up the 1/2 Pedialyte/1/2 Elecare mixture, he starting showing signs of a flushed face - but no fever.  Odd, and I actually asked several times that his temperature be rechecked because he felt warm to the touch - but no fever was recorded overnight. 

He was clingy and moaned a lot in his sleep.  But no fever, and no vomiting, so we advanced the feed to full Elecare.

We did get some sleep overnight, despite his discomfort, and when I woke up, I did my usual check of the room.  I always double check his feeds and rates and vitals - just to see how he's doing.  What I noticed made me instantly sick to my stomach.

Elecare Jr. Vanilla.  VANILLA.

Yup.  The doctor ordered the wrong formula.  The nurse hung the wrong formula.  They fed my baby the wrong formula.  Formula he's reacted to in the past.  This is not okay.

I feel guilty for being asleep at 6am when this was hung.  But I can't feel guilty for sleeping.  I can't feel guilty for their error, and their lack of quality review.

Aidan is okay.  He was uncomfortable and flushed in the face - but he is okay.  What if the mistake had been a dairy-based formula?  Or a soy-based formula?  What if he'd suffered anaphylaxis due to this mistake?  It's not okay, and CHOP needs to get it together.

The rest of the day was frustrating and disappointing.  The usual CHOP fare.  He's not pooping (surprise, surprise) so we're giving Miralax (no results).  He's feeling much better now that he's hydrated and is really ready to come home.

The main thing slowing things down is that I spoke to a GI, explained alllllll of our sordid formula history (the neocate drama - the G feed intolerance - the GJ tube change - the ensuing frequent hospitalizations).

It is my genuine belief at this point that he DOES NOT tolerate Elecare Jr.  When we give it by mouth or G-Tube, he gets rashes, vomiting, and GI pain (Screaming.  So much screaming.  Especially at night).  When we give it by J-Tube, because we have bypassed the stomach, the symptoms are different - but we get decreased motility (leading to constipation so severe, he ends up hospitalized for cleanout) and pain/discomfort.  He's not getting the rashes and vomiting - something about the chemistry of the jejunum vs. the chemistry of the stomach seems to produce a different set of symptoms.  But it seems clear to me.  Before we started Elecare Jr, do you know how many times he had these lower gut issues?  ZERO.  It's related.  It has to be related.  And I think it's the same, whether it's flavored or unflavored.  We never had these issues on the well-tolerated unflavored Neocate Jr or Neocate infant (but, interestingly, we did have the same set of symptoms on flavored Neocate Jr and Splash).

The GI I spoke to this morning seemed on board.  He said that clearly there was an allergic process in play, and that we needed to investigate the micronutrients in the formula to see what he was reacting to.  He even said he knew of a GI in the hospital today that he thought could help.  But he never came back.

Instead, he sent someone else - a resident, I think - to tell me that he was in the OR for the rest of the day, but thinks we should follow back up with our own GI in a month or so, and consider seeing an allergist.  Sound familiar?  It should.  It's what we're always told.  It's nobody's problem.  It's nobody's responsibility.  GI thinks Allergy should help.  Allergy refers us back to GI.  Everyone feels that things are going "generally well" for Aidan.  Everyone but Aidan, who's living in pain every day.  Aidan, who's dying to eat, but starving to live.

Someone has to help us.  Someone has to care.  I was hoping we would find someone today.  We didn't.

Aidan's First Ambulance Ride

Laundry.  Dishes.  Catching up on work.  Watching an episode of True Detective.  These are the things I thought I might be doing on a Tuesday night.

Aidan had other plans.

Aidan usually has other plans.

That looks suspiciously like an ambulance...

It started on Monday.  Aidan's teacher had called to let me know he seemed "off" and "half of his head had a fever" (???)  When we got him home, he seemed happy and playful, so we weren't too concerned.  I was in the kitchen washing some dishes when he ran over and asked, rather frantically, that I take his sweatshirt off.  I guess his fever was spiking pretty rapidly at that point.  I thought he was just being Aidan and/or Three Years Old, so I told him to be patient until I was finished.  No more than five minutes later, I joined him in the living room as he projectile vomited all over the living room floor.  His temperature (on both sides of his head, thank you very much) was 102.

I gave him tylenol and put him to bed - he seemed okay, but would be up several more times needing tylenol for his 102+ fever and vomiting in his bed.  It was a long night.

The next day, I left him with Tom and went to work.  Tom let him sleep in, and when he woke up, he seemed fine.  Not feverish and not vomiting.  We decided to give him some gut rest, so put him on pedialyte feeds for the day.  Tom dropped him off at daycare (in retrospect, probably an error in judgment), but daycare called in the early afternoon to report that he had a 102+ fever and was "shaking uncontrollably."  Tom picked him up right away.

At that point, I was thinking that this seemed very similar to Aidan's flu symptoms, and I wanted him checked for flu quickly - if it was the flu, we could still get him tamiflu and hopefully avoid the weeks of misery and weight loss that accompanied the illness last month.

Aidan's pediatrician was booked solid until the next day, so I decided to take him to Urgent Care - thinking that surely they'd be able to administer a flu swab.  When I got home from work, Aidan was doing pretty well - likely thanks to the tylenol Tom had given him that afternoon.  I held off on taking him to Urgent Care- just put him to bed and hoped for the best.

Around 9:30, Aidan woke up feverish (102.4) and vomiting.  We immediately sprang into action - packing him into the car and heading for CHOP's new Urgent Care facility in King of Prussia.  We arrived around 10:30 (whew!  they close at 11.) and Aidan was still vomiting in the waiting room while I was checking him in.

Urgent Care got some tylenol into him, drew some blood for labs, and started an IV, but because of his high heart rate and dehydration symptoms, they decided to transfer him (via ambulance, no less) to CHOP.

Aidan was none too pleased with this plan.  He hated the restraints, he hated the "big truck" (he specifically asked for a "tiny truck"), and they didn't take him to "Aidan's House" as requested.  Oh well.  That's disappointment for you. 

It's like a really big rear-facing carseat, because safety first!

Watching them strap him onto the stretcher was actually kind of scary.  I guess I didn't realize how sick he was.  I was looking for a flu test and an Rx.  But don't get me wrong - I'm thankful that they recognized he needed more support.

When we arrived at CHOP (around 1:30am), I learned that he had orders for a direct admit.  I was confused and exhausted - and of course didn't have my perfectly planned and packed hospital bag or ANY of my work things.

The Emergency Department was full, so I was glad that Urgent Care had secured him a spot - because the GI floor was also full, and it would be four more hours before a bed opened up on 5 South.

Sleepy Bear

Sweaty Bear

Not much happened down in the ED - we really just hung out, kept him on IV fluids and nausea meds, and waited for his bed upstairs.

Finally, in the early morning hours, we made it up to 5 South - to the same room he stayed in last March, when all hell broke loose with his stomach and we had his GJ placed.  Small world.  Small GI floor.

Feed Frustrations - Part 2

The plan at the moment is to try giving 1-2 ounces by G tube once or twice per day.  I'm never very optimistic when we try anything, but I know that if we don't try this - if we don't prove out the problem, there will be no help.

Day 1 - Saturday - 1oz by G-Tube in the morning, 2oz by G-Tube in the evening.  Seems well-tolerated.  No vomiting.  Is this what hope feels like?

Overnight - Awake many times, crying and coughing.  Diarrhea overnight with immediate diaper rash.

Day 2 - Sunday - I did not give anything by G-Tube in the morning.  Since he'd had diarrhea overnight, I wanted to give him a little recovery time.  I gave 2oz in the evening.  Noted bright red flushed cheeks after feeding that lasted for several hours.

Overnight - Again, awake many times, crying.  Lots of coughing and retching, but no vomiting.  No poop overnight (abnormal for Mr. A - he's an overnight kind of guy).

Day 3 - Monday - Nothing in the morning.  Daycare reports that he's not napping.  Added Prilosec in case the night crying is due to reflux.  Fed 2oz in the evening, noted bright red rash on cheeks and red blotchy skin on neck.  Several hours after 2oz bolus, noted distended belly, but venting gave no relief.

I finally thought to take pictures.

Overnight - Awake lots.  So much crying.  No poop overnight.  No bueno.

At this point, I reached out to Nutrition, GI, and Allergy.  It's difficult to get anyone to call me back, but Allergy bites first - they feel that the rashes are likely unrelated to what we're feeding, but they'd rather defer to GI.  If I'm very nervous, I can bring him in.  It's really GI that I need to speak with.  I never got in touch with Nutrition.  But GI agrees with Allergy that the rashes are unrelated, and that this "very small amount" of formula is unlikely to be causing any issues.  He probably picked up a virus.  We should take a week off and retry again later.

So on what would have been Day 4 (Tuesday), we fed nothing by G-Tube.  Miracle of Miracles - no rash on his face.  No 9 overnight wakeups.  And he pooped completely normally. 

Nice rashless cheeks...  Kid not crying.  Good stuff!

So now I guess we wait and retry this business in another week or so.  Pardon me while I try to scrape together some optimism :-/

Feed Frustrations

It's been about a year since we lost the use of Aidan's stomach.  We don't know exactly why it happened. 

In December of 2012, we fed Aidan exclusively via G-Tube (into his stomach).  By January, he was vomiting everything we fed him.  Through February and March, we tried different Formulas and different feed schedules and different rates.  At the end of March, Aidan was admitted to the hospital for IV fluids and tests.  A dye study confirms that the tube is in place.  A Gastric Emptying Study was fairly traumatic, and gave us no additional information - probably because Aidan couldn't keep the tracer down.  No doctors gave us any answers, but a GJ-Tube was placed in hopes that if we couldn't fix Aidan's stomach, we could at least avoid it.

The stomach problem was never solved - just brushed aside.  It has always nagged at me.  Why does a stomach work every day of a child's life, until the day it stops working, and never works again?  What caused this?  How can we expect a food trial to be successful - ever - without a functional stomach?  Did this have something to do with the formula change?  Nutricia will argue that nothing happened until they're blue in the face, but Aidan's stomach worked before the formula changed, and never worked again afterward.

So here we are.  Over the past six months, Aidan's been hospitalized for some awful things - severe constipation, feed intolerance (even through the jejunum), intussusception - things just aren't going well for him.  GI agreed that something seemed amiss and felt that it was (finally) time to revisit the stomach problem.

The orders were to give 1-2 ounces by G tube once or twice per day.  And what???, I asked.  "And we'll see what happens."

Feeding Tube Awareness Week 2014 - The Very Best

Feeding Tube Awareness Week is coming to a close, and while I reflect on the best of the week, it occurs to me that there is no one best post, photo, or video that sums the week up for me.  The very best of this week lies within the community that rises up to show the world their amazing, happy, resilient children.  

Some families want to tell their story to the world.  They're amazing advocates - telling their stories on their local news and raising awareness and funds to help increase acceptance for tube-fed children (and adults!) everywhere.

Others are newer to this journey, or less sure, or just aren't the limelight type.  But this week brings out the very best in those families too!  Photos are shared, stories are swapped, and advice flows like formula.

I think the best part of this week is the connections that are made.  Tubie families connect to other Tubie families.  Non-Tubie families learn more about the shoes we walk in.  Everybody wins.

Happy Feeding Tube Awareness Week.  Thank you for joining us on this journey. If you take one thing away from this week, let it be this:

If you're curious, ask questions.  If you want to see, ask to look.  We want to spread the word, and it starts with you.  My little boy has a feeding tube, but IT DOESN'T HAVE HIM.  Nothing can hold him back!  

 

Feeding Tube Awareness Week 2014 - Showing off our Tubie Love

Tubie Love isn't just for Feeding Tube Awareness Week.  It's every day of every week.  For every thousand people who look right by this logo, there's one who sees it and just knows.  They know that they're not alone on their path.  We're here too.  We're all doing this thing together and making the world a little bit brighter because we're in it.


We drive in Tubie Style...

 We wear our Tubie Love...

And - of course - we send our Valentines in true Tubie Style!

Have a wonderful Valentine's Day and don't forget to show your Tubie Love!

Feeding Tube Awareness Week 2014 - My Hopes and Dreams for You

On the day Aidan was born, a lifetime of hopes and dreams for him were born too.  Dreams for his future - all of the things he would learn, people he would love, and lives he would touch.  Hopes for the easiest life possible.

These days, my hopes and dreams have gotten more practical, and just a bit more specific.

I hope for Independence.  Tube feeding can be intimidating to an adult, and sometimes it's easy to forget how capable our children can be.  Aidan wants to learn to take care of himself.  I hope that I'm brave enough and patient enough to help him learn.

No Mommy do it.  AIDAN DO IT!

I hope for Confidence.  During Feeding Tube Awareness Week - and all year round - I try to teach Aidan how important it is to share his differences with the world.  It's nothing to hide, nothing to be ashamed of.  It's not a limitation.  It's a body part.  Eyes.  Ears.  Toes.  Tubie.  I hope Aidan never loses the confidence to show the world that he's completely and absolutely perfect, just the way he is.


I hope for Understanding.  This one's not for Aidan.  This one's for everyone else.  I hope that the world can begin to understand that different is okay.  Your Normal is not on our wishlist.  We are happy just the way we are.  We aren't anxiously awaiting the day that Aidan will no longer be tube fed.  This isn't something awful that we tolerate because we have no other choice.  I love my Tubie and I wouldn't change a thing.

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!

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.

Feeding Tube Awareness Week 2014 - It's Almost Here!

I am so excited for Feeding Tube Awareness Week!  This year, families are putting extra special focus on all of amazing and positive things about having a feeding tube and being a Tubie.

A feeding tube is a life-saving medical intervention for someone who can't eat, or can't eat enough to grow and thrive.  But it is so, so much more.  Over the past two years, we have learned that a feeding tube is a symbol of membership in a community that gives love and support when the medical community falls short. 

Families are sent home with these medical devices and minimal training, and enough questions to keep an after-hours line tied up for days.  A quick visit to any of a number of Feeding Tube support communities will show that there is always - always - someone ready to step up and help.  Ready to cheer when you finally find your first safe food, or cry with you  when you fail a much-anticipated scope.  Ready to decipher yet another rash with you, or offer opinions on particularly baffling diaper contents.

Over the next week, I'd like to try to help you understand what it's like to have a tube, to live with a Tubie, and why I quite genuinely feel that this is the Best Thing We've Ever Done.

This picture was a promise.  I was promising that I would do anything for him - anything to protect him.   I'm so thankful for the medical technology that's allowed me to keep my promise.

Feeding Tube Awareness Week 2014 - NOTHING CAN HOLD US BACK!

So often, when faced with the decision to place a feeding tube, families grieve the normal life that their child will lose.  How did things get so awful?  How can things ever be right again?  Is there such thing as "normal" in our lives anymore?

The answer - and I promise you, I wouldn't lie - is the theme of this year's Feeding Tube Awareness Week.  Nothing Can Hold Us Back.

Through our own experiences and our journey with Aidan, never once have I seen a feeding tube stop a kid from being a kid.  Take a mental picture now of whatever you can imagine life with a child on a feeding tube to be like - some days it's harder than that - most days it's easier than that - and these kids will never stop surprising you.  Tubie Kids are some of the toughest out there.  Truly, Nothing Can Hold Them Back!

February 9-15, 2014 is Feeding Tube Awareness Week - Stay tuned next week as we share more about our life with our Tubie.  And as always, you can learn so much more at http://www.feedingtubeawareness.org