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.

Thursday, January 22, 2015

Tube Change - January 2015

January found us inpatient for a tube change (I can't believe it's already been three months!).  It's been a tough month for Aidan for a number of reasons, so I wasn't sure how this hospital visit would go, but they're certainly not optional, so off we went.

This was an important visit for Aidan.  For starters, it was his first hospital stay where he used a hospital bed instead of a crib.  Maybe it was a bigger moment for me than for him, but seeing him in that bed was such a morale-booster.  This time last year, we weren't sure he'd ever understand that he couldn't just wander out of a bed while attached to his IV pole.  The safety awareness just wasn't there.  He's made so much progress, and something like this is a real, tangible sign of that progress.  Oh, and also, glorious, glorious legroom!

Anyway, when we settled in on Tuesday night, Aidan kicked things off by having random rashes pop up that scared the crap out of me.  He was fine when we arrived, and of course (just to freak me out), they only started appearing when I started eating my (non-fish) sushi.  He didn't eat it, he didn't touch it, I didn't touch him.  But the same thing happens to him pretty frequently out in public - mall food courts, restaurants - it's hard to believe it's not food-related, you know? 

Little rash on his back - okay, no biggie...

And this thing on his chest - okay, I can see how this might show up...

Little tummy itchies, no big thing...

GAH! What happened to his face!

Oddly, we were up on 4 East, which is surgical/trauma, instead of 5 South (GI).  His paperwork was processed as a G-Tube initial placement instead of a GJ change, which was... interesting to sort out.  4 East is not my favorite place to stay - the rooms are shared, which is always kind of awkward when you have a screamer.  I hate feeling horrifyingly guilty about my kid freaking out while some other poor kid is trying to rest and recover from his hideously painful testicular torsion.

Anyway, we had the usual drama around IV placement - four fails before we finally got one in.  Aidan's gotten fantastic at sounding unspeakably sad and accusatory.  "Why did you just hurt me, doctor?"  "Please stop with the ouchies!"  After much ado, we got the IV in and fluids started.  I gave Aidan his reward - a new Chugger - even though he admitted that he "wasn't brave because he just cried and whined and said ouchie".  Still brave, kiddo.  Still brave.

Sad boy, warm flippers

Drama's over, new train on board
First thing Wednesday morning, Aidan and I went down to IR, and the real fun got started.  He coughed - I'm not even joking here - ONE TIME in the elevator, so the whole sedation plan went out the window.  No ketamine for Aidan, he was forced to remain kinda-sorta-awake/kinda-sorta-sedated.  Horrible.  He was awake and screaming (despite the versed) when I left him in the IR room, and awake and screaming when I got him back.  I'll go on ahead and assume he screamed the whole time.  Thanks for traumatizing him when that's precisely what we were trying to avoid by admitting him, fasting inpatient, and sedating him.

Before things got crazy up in IR...
 Anyway, when all was said and done, we were the proud new owners of the AMT G-JET.

He "woke up" from his "sedation" pretty hard - he screamed at everyone and everything for a few hours before finally passing out.   Poor kid.

Side note - I know they need to put leads on him, but isn't there anything that he's not allergic to?  For flip's sake, this poor kid's skin...

 Anyway, we spent the rest of Wednesday ramping up feeds, titrating down IV fluids, and checking blood sugars.  The only issue we ran into was a random low blood sugar when the nurse was a few minutes late with his formula refill.  Not even joking, we're talking 5 minutes off formula, and he ran low.  Poor kid just can't keep his sugars up on his own - which we know, but it's always kind of a crazy thing to see how fast he drops.

The team in the PACU gave Aidan a "Brave Kid" Cape and he wore it all over CHOP as he explored and recovered.  What an amazing, empowering thing - everyone he saw stopped him to gush over how excited they were to meet the bravest kid in the hospital.

 All in all, it was a good stay, and Aidan actually tolerated his feeds better than ever before.  Maybe next time, we'll be home same-day!  Which means that this little nugget will get to spend a bit more time in his own big boy bed.  Fingers crossed!

Tuesday, December 30, 2014

The Flu, and Farewell to 2014

Two posts in one week?  We must be inpatient...

The Great Influenza of 2014

You know, I'd just been saying to Tom that it was going to be so nice to have one nice healthy Christmas for Aidan.  So, truly, I asked for this.

It started on Saturday (12/21).  He was fine all day - he played all morning, went to Occupational Therapy and was actually fairly cooperative, went for a haircut and walked around the mall on his own feet, and then we all went grocery shopping.  Long, productive day.  So when he seemed a bit extra tired and cranky, we weren't too concerned - no nap will do that to a guy!  Things went downhill fast after bedtime - his breathing was fast and shallow, and although he was keeping his sats up around 95ish, his heart rate was high and he had a low-grade fever.  Something was brewing. Every 20 minutes, he'd wake up and cry, needing to be held and comforted back to sleep.  He complained that his tummy hurt and started gagging and retching - sure he was going to throw up (we know that he really can't, but when he's nauseous, he's so sure that he will).  

By morning, he was clearly sick.  Slumped halfheartedly in his beanbag chair, refusing to walk because "my feet hurt for walking, so carry me mommy!", feverish, lethargic, and still retching.  

I busied myself around the house, finishing up dishes and laundry and other things that needed to be done to get the house in order, while playing the "hospital or not?" game in my head.  I called Urgent Care to ask if they could do a rapid flu test - they couldn't, but advised what I already knew.  Half an hour later, we were en route to CHOP.

The ER was a madhouse - clearly, everyone ELSE in the world was ALSO sick on Christmas week, so we waited about an hour to be seen.  Aidan spent that time practicing his "If I look really sick, and super sad, will it get me more presents for Christmas?" look.  It isn't not working...

Once we got a room - and a pretty SWEET room too actually (it had an en suite bathroom!), we settled in for nine hours of who even knows what.  They did some bloodwork, suctioned him for flu/RSV testing, placed an IV (the usual drama ensued), and gave fluids and sugars.

Aidan looked suitably sad the whole time.  Eventually, he was admitted upstairs for IV fluids and sugars while he got through whatever virus was taking him down.  We'd later find out that they sent Aidan's flu swab on the slow boat to China because they didn't think flu was likely, but oh guess what, he tested positive for flu.

Anyway, once we got upstairs, (new room!  5S4) Aidan and Daddy hung out for a bit while I went down to the car to get my overnight bag, where I discovered much to my extreme dismay that I forgot a vital piece of work equipment, and I had to drive all the way home for it.  An hour each way.  At midnight.  Kill me now.  So yeah, I did that, and came back with some awesome Sofia the First action figures for Aidan from Santa.  

You might be thinking they look just like your daughter's dolls.  So close.  But not quite, because they're obviously action figures.

Anyway, uneventful night, except for all of the blood sugar testing and such, and we got the flu Dx and first dose of Tamiflu in the morning.  It must have made him pretty drowsy, because the poor kiddo was out like a light for most of the next afternoon (Monday, 12/22).

We were able to get him back up to full feed rate and no IV, despite some icky GI side effects, so this flustravaganza was only a 1.5 day affair, which might actually be an all-time record low (way to go, Aidan!).  Very happy to bring him home and spend Christmas at home and (relatively) on the mend.

So long, CHOP!  See you in 2015!