Monday, October 26, 2015

Genetics and Complex Care

I think it's been a while since we've actually had anything hopeful to say, but as we wrap up October, we've been moving forward and feeling kind of positive about things.

We did see Genetics, although it was not the most productive visit.  Disappointing, since we've been waiting so long to get in there.  Their only idea, really, was to test him for Russell Silver Syndrome - a congenital growth disorder.  We'll see how that turns out, although I don't expect any big answers there.  He doesn't look like an RSS kid.  I don't even think Genetics expects answers.  On the up side, Aidan thought the Genetics waiting room was the most fun waiting room he's seen in a long time.

Being silly at Genetics
Thankfully, the Diagnostic/Complex Care Center visit went better.  So much better.  I have no idea how we got in to see Dr. M so quickly, but I'm thankful for whatever backstage witchcraft and wizardry made it all happen.  Anyway, the plan from our visit was to have Dr. M's office coordinate all of our future inpatient stays, which should hopefully make a big difference in our overall level of frustration every few months.  He will also be contacting Genetics to suggest that they dig deeper on the PHKB mutation.  The bigger (scarier?) thing he's going to work on is having CHOP's Mito team review Aidan's chart get their thoughts and see if we can start evaluating him for a Mitochondrial disease.  I don't know exactly how to feel about this, so for the moment, I'm going to just focus on being hopeful that this is a new idea that we haven't explored yet, and maybe it will take us in new directions that will give us betters ideas for treatment.

Aidan has been so tired lately.  I feel like all I hear from him is that he's too tired to play, or too tired to go anywhere.  I don't know what's going on.  His night sleep isn't good - but it's certainly not worse than it has been.  Weekend visits to Nikki's new house have been pretty sleepy - I just don't know how to make this better, and it breaks my heart.

But we do still get to see this Aidan - our sweet little goofball, who brings so much light into our lives.  I'll do anything - take him anywhere, to see anyone - to get just a bit more of this face into our lives.

Silly :)
The rest of this month will see Aidan at CHOP for his swallow study and his GJ tube change.  Hopefully, he'll be back on his feet and feeling good in time for Halloween - he's got big Trick or Treat plans with his best buddy.

Still working to schedule our trip to Pittsburgh.  I know they've been reviewing his records, and hope to get in to see them soon.

Sunday, October 11, 2015

Lots of appointments to come!

Soooo, it's been a few days a while a month forever.  We've been okay, hanging in and trying to take things one day at a time.  Things are just so overwhelming right now, and writing about them is sometimes just a little more than I can handle.  But really, we are doing okay, we just have so much on our plates.

We've done some fun things in the past month - the Strides for Safe Kids walk was a good time and Aidan did surprisingly well in the crowd.  After that event, Aidan got to go to a Shopkins trading event - which was *awesome* - he did such a great job talking to the other children and asking if they wanted to trade.  No tears - I was so proud!  We also attended the Autism Awareness event at the zoo a few weekends ago, which has grown into a really nice event with great attendance and helpful networking opportunities.  I love that it's at our local zoo, which Aidan knows so well that it doesn't overwhelm him.

He's also been working hard on feeding skills, and has started feeding therapy.  It's only twice a week, and due to scheduling stupidity, it works out to 3 times every two weeks, which is only slightly better than nothing.  Luckily, he has a great team of people in his life, who continue to work with him and encourage him every day at school, and recently I happened to walk in on him actually nibbling at a rice flour pancake.  Proud mama over here!  He doesn't have much of a bite with his molars, especially on his left side, and getting anything bigger than a crumb in his mouth makes him gag - but he's getting there!  Unfortunately, his swallow is questionable and needs to be more formally evaluated for airway safety later this month, so until then, we're not working on liquids.

October brought us the tiniest bit of drama - an urgent care visit, and eventually an ER visit for a yucky stoma.  I really hate stoma problems, and we're always so lucky that his stoma is so beautiful and infection-free.  But really kind of out of nowhere, it sprouted granulation tissue that got infected and painful, and things were just no fun for a while there.  Right, as you would imagine, when I had no time to spend in the Urgent Care/ER all night long, because of course.  But I'm thanking my lucky stars that's all it was, because as I sit here writing this, I'm watching some of the babies I love from afar go through ten kinds of hell inpatient, and I know how much worse everything could be.  Aidan's been doing pretty well lately, and I don't take that for granted even for a minute.

We've had to stop Karate for now.  Aidan's little body is just too tired.  He just can't do it.  And I can't keep forcing him to do something that's just too much

Heis participating in soccer, which is super adorable.  Although I might be using the word "participating" loosely, since he really likes to just sit on his ball and watch once he's tired, and without 1:1 coaching, he forgets what he's doing and wanders off.  Don't care.  Adorable.  After soccer wraps up, he'll be taking a break from sports until we get his energy levels figured out, because I really think there's something awry here.  I'm hopeful that either CHOP or CHP has some ideas for us.

He's the dainty one, seated while everyone else plays.
The rest of the month is coming at us fast and furious - this week we'll see Genetics (this one's kind of a big deal, since we're looking for big answers here, or at least big ideas and a path forward) and the dentist (not a scary one for us, but a rough one for Aidan).  Next week, the Complex Care/Diagnostic Center which is another big deal for us.  I don't even really know what to expect from that visit, I just know that we need help, and we're hoping they can give it.  The following week, Aidan's swallow study, and then he's inpatient for a tube change.  Hopeful that he stays healthy and is discharged and feeling well enough for Halloween fun.

We have forwarded his records along to Pittsburgh and are awaiting word onwhen we'll be traveling.  I'm nervous - not knowing exactly when we'll go, and how I'll handle it with work, and whether it will even give us any answers - all if it makes me sick to my stomach, if I'm being honest.  But these are all the right things to do, and the right steps forward, and I just have to trust that Aidan will find answers down one of these avenues.

We'll keep you posted as appointments happen and travel plans come together.  Wish us luck!

Sunday, September 13, 2015

September already? Playdates, Sesame Place, and Support

What a week.  September already!

We kicked it off with a playdate with one of his best friends.  We played at Jungle Wonder, which is an awesome, fun, deliciously germy place to run, jump, and climb.  It was fun to watch him have so much fun with her, but after the first half hour, it was clear that he was struggling to keep up.  As she ran and climbed, he started to lag behind.  His little body just gets so tired.  What's tough is that he's old enough now to know that he's not keeping up.  There's really nothing quite as sad as hearing your four-year-old say "Mommy, my friends have blazing fast speed.  Why don't I have blazing fast speed?"

I'm grateful that he's able to get out there and play.  Grateful that he's not immunocompromised, or so medically fragile that playdates are a pipe dream.  I just wish I understood why he's not keeping up, and why his body isn't supporting his four-year-old lifestyle.

Anyway - on a happier note - we've officially reached the age of eagerly awaiting toy catalogs in the mail.  This week, a sale flyer from Learning Express came, and he picked out all of the Shopkins that he hopes Santa brings.  He visited the toys he's loving at Target and we decided to take pictures so he won't forget what to tell Santa all about.  Way too cute.

It was pretty nice to have a long weekend at my disposal - I took advantage of it by having a special Mommy/Aidan date at Sesame Place.  It was amazing.  He loved the rides and even met some characters.  I was so proud of him - everything he tried, his behavior, everything.  It was really the perfect day.

Tuesday brought me to the Support Group that Mimi recommended.  As the other moms talked about what brought them to the group - some more than a decade ago - I thought about my own reasons.  The short version - it was a recent visit to Nutrition where I came especially unglued, and Mimi thought I might need some other moms to connect with.  She wasn't wrong.

It felt right to be there.  These moms have been through the ringer, more than a few times.  Their children have been through all of the worst and scariest things, and these moms lived through all of it with them.  There seemed to be this common thread for most of us - nearly everyone there had a child with an underlying issue that was still undiagnosed.  A known collection of problems, a suspicion that there must be some underlying cause, but no unifying diagnosis.  As we each introduced ourselves and spoke of our children, there was this easy back-and-forth between everyone.  Sharing of ideas and thoughts, and when it came time for me to speak, these veteran moms immediately thought Mito.

It would be an answer - but it's not the answer I want. I'm so hopeful that Rare Care and Diagnostic/Complex Care have ideas that would explain things and get us on the right track.  All I want for him is to feel better - to feel good, to live a happy, pain free life, and to feel normal - whatever normal may turn out to be.

While we work on figuring "normal" out, my heart is always warmed by the availability of volunteer organizations whose sole purpose is to brighten the days of children whose daily lives are a struggle.  Recently, someone told us about Feel Better Friends ( - handmade dolls crafted by volunteers for children battling cancer or chronic illness.  The dolls are made in the likeness of the little fighter they are sent to.  Aidan's friend (creatively named Aidan) sports a button feeding tube, a backpack, and a medic-alert bracelet - just like him!  Also, little Aidan loves school buses - just like a little guy I happen to know and love.

Seriously, how adorable?

My little ham

Something new - because nighttime wasn't fun enough - a middle of the night wake-up to a hysterical boy claiming that "my mouth isn't right" and "I'm not my right size!"  He was disoriented and confused and kept talking absolute nonsense.  "I can't talk to you right!" "Please don't leave my body here!" "My throw up isn't going to work."

Ugh.  Awful.  I hate not knowing what's going on.  His blood sugar was fine, he had no fever, he was just disoriented and apparently nauseous.  I hooked him up to a farrel bag, because what else is there to do, and he immediately drained some bile.  That helped his nausea enough to convince him to take some melatonin and get back to bed, but no sleep for me.  I don't know what happened, but it scared him enough to scare me. 

Sad little sicky...

Next week - Strides for Safe Kids (annual food allergy expo), Shopkins Swapkins event, Aidan's first soccer game, and his first feeding therapy appointment.  Whew!

Friday, September 4, 2015

Updates - Complex Care, Rare Care, and Besties

It's been a better week.  I feel like I've accomplished more, anyway.  I've made strides toward getting Aidan where he needs to be.

The Diagnostic and Complex Care Team reviewed Aidan's chart and called to set up his consult with Dr. Magnusson.  I don't know whether this means it's a visit to decide whether they'll take Aidan on, or it's the first step in the process of having Dr. Magnusson on our side.  Either way, it's a step in the direction we so desperately need, and it isn't even that far off (October 23rd).  I've heard truly amazing things about this doctor - that he's amazing to have on your side, that he's smart and he'll fight for you, get you what you need, and put you in your place when need be.  All of that and more - and we need it all so badly.  I'm looking forward to the appointment, but I also know that I need to seriously organize my thoughts before then.  I need to be armed with a clear and concise history and how and where we need his help.

I've also been continuing to talk with Children's Hospital of Pittsburgh's Center for Rare Disease Therapy (Rare Care).  I am working with CHOP to gather Aidan's medical records, and once I have them and can get them to Rare Care, we'll be able to figure out exactly which doctors Aidan needs to see there.  I've faxed the requests over to CHOP's records department, so now I wait.  I have no idea how long it will take for CHOP to gather and mail his records to me.  I'm oddly curious to see them, actually.  But mostly, I'm anxious to get them to Rare Care so we can get the ball rolling.  They have appointments available in November, but think that if we can get his records over quickly, they may be able to squeeze him in sooner.  November would be great.  Sooner would be amazing.

All of this is so much more direction than we had even two weeks ago.

On the home front, sleep has been hard to come by this week. I think Aidan's been sleeping more restlessly than usual - we've had two accidental unhookings overnight, and when we check on him overnight, he seems especially entangled lately.  A few nights ago, we were all awoken at 4:30am to a low blood sugar, high ketone boy.  He was cold and clammy and had been vomiting repeatedly in bed - all because his extension popped out and we fed the bed.  Totally commonplace in the feeding tube world, but very dangerous for a hypoglycemic kiddo.

This has to be a strangulation hazard - right?
On a fun note - Aidan got to spend time with his bestie over the weekend.  It will never stop warming my heart to see him just get to be a little boy.  These boys have so much to teach each other.  I love that T pushes Aidan to try bigger, braver, better things. I love that Aidan shows T that it's okay for everyone to do things in their own time, at their own speed.  I love that they can both learn how to meet a friend where he is, even if that's not where you are.  T is a sweet boy with a sensitive heart who has loved Aidan like a brother since birth.  We are so lucky to know him.

Best Friends go with it when you rename their clubhouse "The Charmed House"

He also (creative boy!) had a great time making a robot that could do all of his smiling for him.  Maybe I've been irritating him too much, asking him to smile for pictures?  He was so proud of his robot's big smile, and said that now HE doesn't have to smile.  Great problem-solving, little Vulcan.  So proud :)

All in all, it's been a better week.  Over the next week, I'm hoping for more communication with Rare Care, a special Mommy/Aidan date on Labor Day, and my first time at a special needs parent support group - something that's been FAR TOO LONG in coming.

Friday, August 28, 2015

New Ideas and Next Steps

I feel like things have been heading slowly but surely downhill.  Not for Aidan, really.  Just for me. 

As a mother, I feel like I owe him so much more than a childhood full of fear and pain and “my body isn’t working anymore.”  We are spending so much time managing today that I’m almost afraid to even think about the future – but if I don’t, who will?  And it’s a scary thought.  If at age four, we’re already managing his anxieties pharmaceutically, what will it look like at fourteen?  If at age four, his body is too tired to spend a day on his feet at the zoo or the amusement park, what will it look like at forty?  Why is it that he has the appropriate skills to run, jump, and play – but not the energy required to actually do it?

I look into his future and see nothing but the best and brightest for him. He’s amazing.  He’s brilliant and quirky and funny.  He’s sensitive and sweet, and a charming mix of silly and puzzlingly serious.  He will go to college and learn everything he ever wanted to know.  He will get a job and do fantastic things for this world.  He will meet someone who wants to spend their life figuring him out, because with him, the destination will always be worth the ride.  I know all of these things and I never, ever doubt them.

But I also know that it’s my job to get him there.  It’s my job to keep him safe.  To make sure he has a childhood as free of hurt and fear as I possibly can.  To make sure that we’ve done absolutely everything to keep that silly “not working today” body in check.  Come on, little body!  Aidan needs you!  

Amazing kid... Tired body

Over the past few months, we’ve seen new specialists who have given us new (half) answers – a genetic mutation that may or may not be causing some (but not all) of his problems.  “It is likely there is another mutation not identified.” (Read: We know, this doesn’t explain everything.  We wish we could help more.  We’re sorry.)  New meds to treat anxiety and attention deficits.  And they’re helpful, because on any given day, we are doing more or less okay - but the overall picture isn’t really improving.  We have a child who can’t eat anything.  Can’t sleep.  Requires hospitalizations far too often.  Can’t stay hydrated despite our best efforts.  Can’t regulate his blood sugar.  Can’t count on his own body to keep him going all day long.  Isn’t growing enough, despite the best nutrition we can give him.  It’s too much.  Too much all happening at once in a “healthy, normal child.”

So it’s strict food avoidance.  All feeds via J tube.  Melatonin for sleep.  More melatonin for wakefulness.  Water flushes.  More water flushes.  More water flushes.  Lots of wardrobe changes when he sweats out all of the water we’ve flushed in.  Blood sugar checks every 3 hours.  Inpatient fasting before procedures.  A special needs stroller when his legs just won’t carry him any further.  And therapy – so much therapy.  OT. PT. Speech.  Feeding.  Behavior.

We’re told that this is what well-managed looks like.  When the next problem arises, we’ll find something to address that too.  That’s how you manage a child with “lots going on.”  But, really, though?

So where do we go from here?  What do we do? 

Today, I reached out to CHOP’s Complex Care team, in hopes that they can help us.  I don’t know if they’ll take him on as a patient – I hope they do.  We need more help.  We need more answers.  We need more avenues to explore.  What is happening to this little body?  How do we make it better?  How do we make our lives better?  If he’ll never eat normally, do we keep pushing foods?  For everything we do, every decision and intervention we take, I want to know – will this make his life better?

I also reached out to another hospital (Children’s Hospital of Pittsburgh).  I have been thinking about this for a long time, but actually doing it felt like staring up at Everest while lacing up pink bunny slippers.  Is this really doable?  Am I crazy?  Maybe.  But I’m not going to stop until I’ve gotten him the best care I can.  I hadn’t considered them before because they don’t have a program for Eosinophilic Disorders, but with this new genetic finding, I am hopeful that they may be able to help us.  Glycogen Storage Diseases are among the conditions they treat in their Center for Rare Disease Therapy.

Very shortly after emailing the department, I connected with the coordinator at the Rare Disease Center today, and talked through some of Aidan’s history.  I heard five of the most encouraging words in the English language: I think we can help.  So now, I work through gathering Aidan’s medical records and hopefully planning a trip to Pittsburgh in the near(ish?) future.  They will help coordinate a place for us to stay while we’re there – there is a RMH attached to the hospital, and some hotels nearby in case the RMH is full.  The hope is that we can coordinate our visit so that we see everyone we need to see while we’re there.  Whether this would be “gathering ideas to bring back to our CHOP team” or “starting with a new team altogether” – I don’t honestly know.  But the prospect of new eyes on Aidan is encouraging.

I don’t know where this is all heading.  I do promise, though, to keep you all better updated as we figure things out and move forward.

This is the face of insatiable curiosity.  I think he gets it from Dad <3

Tuesday, August 25, 2015

All Of The Unfair - and why it's okay for me to whine about it sometimes

Sometimes, life is unfair.

It's the kind of thing you tell your kid when he so desperately wants that new toy, or so desperately wants not to eat that broccoli.  You're the adult, and you know that he can't have exactly what he wants, exactly when he wants it.  Life gets in the way, you need to buy groceries instead of toys, and you need to eat broccoli to grow big and strong.  Sometimes, life is unfair.

Picture, if you will, a little boy who loves Chuggington Trains.  He loves them more than almost anything.  I'd never ask him to choose between Mommy and Chuggingon Trains, because frankly, I don't think I'm emotionally prepared for his response.  Chuggington is so immediately loveable for him, because the songs are easily memorized (ah, familiarity), the characters are clear and concise as they describe their thoughts and feelings (nothing ruins a good show faster than having no clue what's going on!), and the toys look just exactly like the trains on TV (there's our good friend familiarity again).  Other little boys seem to like playing with them too, whether they're Chuggington fans or not, so they're a pretty universal social uniter.  Aaaaand, the show doesn't make me want to insert ice pick A into brain stem B, like Thomas the Train does.  Really, Chuggington for President.  I digress.

So there's a little boy who loves Chuggington, more than almost anything.  As a special Christmas gift surprise, he got tickets to see Chuggington Live on stage with his Mommy.  It was going to be a really special big boy Mommy/Aidan day, and since Mommy's not insane, Aidan wasn't told of the surprise until the day of.  But boy, was he excited!  Big, real Chuggers!  No way!  Let's go!!!

Now picture, if you will, that little boy starting to feel sick.  The drive to Chuggington is long, and as time goes by, the little boy feels sicker.  By the time he arrives at the show, the sad truth is obvious.  There isn't going to be any Chuggington today.  There's just going to be a 75 minute drive to the Emergency Room, where he'll be poked and prodded while nervously asking if he can go see those Big Real Chuggers yet.

Then, he'll go home, and get sicker.  The next day, he'll go to the doctor, who will send him back to the hospital in a big, scary Ambulance.  This isn't Big Real Chuggers, Mommy.  I know, Baby.  I'm so sorry. More poking, more prodding.  X-Rays, IV's, no sleep (we didn't even get admitted up into a room until 8am!), and certainly no Big Real Chuggers.

And I get it.  Really, I understand.  Life isn't fair.  I know how to say all of the right things to Aidan, to make him understand, and to help keep him from being an angry and entitled little urchin.  But here's the thing - who's going to come explain it to me?

Because It isn't fair that catching some plain old run-of-the-mill virus sends him to the hospital, and other kids wipe their noses on their sleeves and get on with their lives.

It isn't fair that everyone is signing up to bring candy, juice, and cupcakes to this week's school party, but all my kid wants is to hug a banana.  "I won't eat it, Mommy.  I promise.  I just want to hug it.  Please?  I love that yellow guy so much."

It isn't fair that everything that happens to him forces me to doubt whether I can care for my own child at home.  While other parents wonder if if their kid is too sick for school or healthy enough to throw at the wall/hope it sticks, my brain is overflowing with phrases like feed intolerance, elevated ketones, hypoglycemia, dysmotility, and direct admit.

It isn't fair that my kid *just knows* that he wants the IV supply cart removed from his ER room before he'll set foot in there.  Or that he chastises his nurses for using sanitizer instead of soap and water.  Or that he requests specific toys from the floor's playroom, because he knows they're there.  It isn't fair that all of this is so normal to him.

It isn't fair that he gets a cup of water and a spoon at the ice cream shop, while everyone else gets ice cream.  "Don't worry mommy, I can just pretend it's ice cream, because I love it!"

None of this is fair.  He deserves so much better than he gets.  He doesn't really know how unfair any of it is - not yet, anyway.  He knows that his life is pretty great, and that he's loved, and that he's safe.  He knows that he has everything he could ever need, and most things things he's ever wanted.  Unfair, to him, is bedtime when he'd rather it was TV time, going home instead of going to Target, and mom meaning No when she says No.

So I know, these are all my thoughts, and not his.  But you know what?  That's okay.  It's okay for me to hate the cards he was dealt sometimes.  It's okay to say "How am I today?  Not so good...  This day is not so good at all..."  There's no special trophy for pretending everything's just wonderful all the time.  My little boy is brave, and and he's tough, but he shouldn't have to be - and it's A-OK for me to feel that way today..

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.