Thursday, May 21, 2015

National Eosinophil Awareness Week - Day in the Life

It’s National Eosinophil Awareness Week.  I haven’t really done anything, but I’m aware.  Boy, am I ever aware.

A lot of families I know posted challenges on Facebook – Eat like an EoE kid for a day!  They’re accompanied by lists of foods that have to be avoided by their children (common culprits like peanuts, soy, wheat, milk, eggs – and less common ones like apples, potato, beef.)  Others post lists of the meager and incongruous groupings of things their children can eat (tapioca, rice, turkey, blueberry) and urge their friends and family to step into these shoes, just for a day.  If you fail, donate $10 to Eosinophilic Disorder research.  If you don’t – think about living every day this way – maybe donate anyway.

I would never ask this of my friends or family.  I’d never wish it on my worst enemy (okay, maybe my worst enemy.)  As you know, if you know us at all, Aidan has no foods.  None.  Nothing.

If you ask him, he’ll happily tell you that his favorite snacks are chocolate, pepperoni pizza, and pretzels.  Those, he’s decided, are really socially appropriate things to say.  Sometimes he needs me to remind him what color chocolate is because he really doesn’t know.  Can you imagine?

While other families are drilling their preschoolers on stranger danger, Aidan is learning to be strong and assertive when someone tries to offer him a snack.  No, I have allergies!  No, I can’t have that!  Just. Say. No. 

So, okay, I won’t ask that you live a day in his life.  But close your eyes for a minute and think about it.  As your friends and family enjoy their snacks and meals, you can have a cup of water.  You can’t sit too close to anyone who might be eating – that wouldn’t be safe for you.  You can’t play with any toys or work on any crafts with food ingredients (sorry, Play Doh!) – not safe.  No soaps, lotions, or shampoos with “all natural” ingredients like fruit extracts or shea butter – might as well just say “all deadly.”  As you go through your day tomorrow, think about how different it might be if food – everything that is food or has food in it had to go. 

Isn’t it all the more impressive that this guy does it all with a smile?

Friday, April 3, 2015

Checking In...

Sometimes, so much time passes since I last wrote, I feel like I should have something monumental to say.  But I don't, so I don't say anything at all, and then you don't hear anything from us until something awful happens.

Nothing awful has happened.

We're still here, taking things one day at a time and trying to keep it all in perspective when I think it's all too much.

We finally completed a sleep study in January (dreadful) and determined that, although he wakes up at least ten thousand times every night, it's not a respiratory problem.  Obviously great news from a pulmonary perspective, though not the most helpful thing to hear from a "let's get this kid snoozin'" point of view.  But we've started using Melatonin with some success, so we're at least moving in the right direction.
Hi, I'm checking in for my Awake Study?
Sleep is for losers...
Aidan spent some time inpatient in February with a GI virus that he picked up (probably at school) and I went to a very dark place.  Parents of healthy children aren't living this life, and I hope they never have to.  (Just like *we* aren't living the lives of NICU and PICU families, or Cancer families, and hope beyond hope we never know their "normal.")  But the GI virus that sends a classmate home early one afternoon for some extra rest and fluids sends Aidan to CHOP by ambulance (inpatient for 4 days, home for 4, inpatient again for 5), leaves him on anti-emetic medication for weeks to combat constant vomiting because the virus disrupted his motility, and steals away all of the weight he'd gained since October.  And I'm so angry because it's so unfair.  But that's another topic for another day.

I'm sick, but ambulances are awesome!

A boy and his bucket

His wife will thank me for this later...

FINALLY time to go home!

We checked in again with Endocrinology when the madness that was our inpatient stay(s) wrapped up, and were pretty soundly brushed off.  Aidan has good weight gain and poor linear growth, but our endocrinologist is generally unconcerned and feels there's really nothing to be done.  At this point, her only concern for him is his Ketotic Hypoglycemia, so she's referring him over to her colleagues on the Hypoglycemia team.

March brought new focus to Aidan's Developmental concerns.  I think sometimes, it takes a really forceful nudge - just the right person saying just the right thing - to get ready to change your approach.  In our case, it was Aidan's Psychologist and his Behaviorist.  Tom and I both really respect them, and when we met for our tri-annual review, we all talked through some new things that we hadn't really discussed before.  I think this is going to lead to some different approaches to Aidan's behavioral interventions.  Stay tuned on that.

The next few months should be interesting, as always - in April, we will be seeing orthopedics to check in on Aidan's legs and feet, Developmental Pediatrics to review our new plans and services for Aidan, and he'll be heading inpatient on the 20th for his GJ change on the 21st.  In May, we head to Metabolism for the first time, and we meet with an Endocrinologist from the Hypoglycemia team.  In June, back to Developmental Peds.  And somewhere in here will be a first visit to CHOP's Genetics department, since we've only ever seen genetics once at another hospital, and everyone agrees this is something that needs to be revisited.  His case is currently under review, and we should hear back within the next few days regarding which doctor will see him and when.

In the meantime, we're doing all of the usual stuff.  Aidan's going to a new school and is doing well there, especially now that we've added full time private duty nursing (Bayada has been a huge positive addition to Aidan's team).  He's still getting lots of therapy and making amazing strides with his speech and motor delays.  He started Karate in January, and holy smack, does he ever look adorable!

More to come, soon I hope, but for now, know that we do appreciate every single time you reach out to check in.  We're still alive, and sometimes I need a little (big) nudge to dig out from under 10,000 pounds of life to return your call (text/email/attempt at actual verbal communication).

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.