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!

Monday, December 22, 2014

Aidan… With Eos does Halloween

As December draws to a close, I realize that I haven’t really had a chance to reflect on Halloween.  So, how does a food-free, pumpkin-allergic boy with high anxiety and a hatred of costumes do Halloween?  Very Carefully.

It takes some planning, to be sure. 

Hurdle #1 – The costume.  The boy hates things that touch his head, face, or neck.  Also, he’s not thrilled with pants that don’t look like his regular everyday pants, shirts that do and/or don’t have sleeves, jackets, hats, or nudity.  He hates shoes that look different than his normal shoes, boots, sandals, socks with “things” in them, and being barefoot.  So I can tell you quite honestly that if getting dressed every day is a war, then a Halloween Costume is a Nuclear Bomb.

By this age (almost four), most kids have some idea of what they’d like to be.  The idea might change daily (hourly?), but there are ideas out there.  Ninja Turtle.  Queen Elsa.  Spider Man.  Sharknado.  We don’t really have that here.  Though I don’t know what every child with Autism is like, my child with Autism is too literal to really “get it” – he knows that he isn’t a Ninja Turtle, so how absurd to dress up like one.

Once we get through that, with assurances upon assurances that we’re just pretending, isn’t that silly!?, we still need to figure out who/what we’re pretending to be.  This year, it really just fell into our laps.  After a particularly positive visit with his GI, Aidan looked at me and said “Do you think I’m Doctor Liacouras?”  I can make that happen, kid!  Traditional white lab coat with a stethoscope wouldn’t really do – Dr. L is a Surgeon and Surgeons wear Scrubs – a quick query to my 200 closest friends got us a couple of pairs of embroidered scrubs, ready for Halloween happiness.  Since our little doctor-to-be has no fewer than five doctor kits of his own, accessories were already covered.  We lucked out here – scrubs are as close as humanly possible to pajamas, and it only took Aidan a couple of trial runs to get used to wearing them.  By Halloween, putting them on was a privilege! He now has scrub options, and can give you a scrub fashion show.

Hurdle #2 – The d├ęcor.  Okay, so pumpkins.  We don’t do pumpkins.  The boy is severely allergic, think anaphylaxis.  Since I take death pretty seriously, we don’t play around, and there were no pumpkins to be found in our household.  No worries though – we had plenty of faux pumpkin love, tubie-style.

Hurdle #3 – The treats.  This is the big bad.  And the problem is two-fold – both at school and out in the community.  I’ll tackle school first.

As Halloween approached, we got a note home from school inviting us to come visit for Aidan’s Halloween parade, and then stay to help celebrate by decorating cookies.  Really?  I had to say something – honestly, WHY do three-year-olds need cookies on Halloween?  Is a Halloween Craft really just too disappointing?  I responded with an email:

I got the note about next week's Halloween Parade and cookie decorating activity.  Obviously, Aidan can't participate in cookie decorating, but I would like to help find an alternative activity that he can do so that he won't feel excluded.  It's very important to us that Aidan be able to participate in these activities with his peers as often as possible.

In the future, please let me know if there's anything I can do to help make celebrations more inclusive by taking the focus away from food.  I would be happy to help provide crafts or activities for his classmates that would allow everyone to safely enjoy the celebration together.

I don’t know what I’d hoped to accomplish – I just needed them to know that whether they knew it or not, they were excluding Aidan by choosing something that literally every child but him could do, and it’s not the only way to celebrate.  To call their response disappointing is an understatement.

Thank you for your email. We do have crafts for the children as well. Please understand that when planning Halloween we tend to keep activities very simple as very few families choose to stay after the parade.  I do however understand your concern and would never exclude Aidan from the class.
Have a nice weekend.

It’s hurtful, I think, because I’ve told them that they’re excluding him and their only response is a halfhearted “Oh we would never…”  I did the best I could, because that the end of the day, we are his parents and it's our job to fight these battles.  I sent him foam shapes that might look like “cookies” along with glitter glue “frosting” and foam sticker “sprinkles.”  I wasn’t at the party, but my husband tells me that he had a good time.

I also sent in non-food treats for all of his peers, because that’s how we roll.  His classmates’ parents either know he has severe allergies, or think we’re really pointlessly passionate about not eating ever.  Either way, I think they went over well.

I’m sure this is just the first of many run-ins (Actually, not the first, just the most recent.) with school over inclusion.  It just breaks my heart to know that they don’t care.  “Easy” won out over “Right”, and there’s been a noticeable difference in the way his school has treated us since this email exchange. 

But back to the positive stuff – Treats Out and About.

Our Halloween tradition is to Trick or Treat with Aidan’s best friend, Teddy.  This year was no exception, so Dr. Aidan and Engineer Teddy went out on the town and collected truly insane amounts of candy from every “Halloween House” in Teddy’s neighborhood.  Having prepared extensively (thank you, social stories, TV shows, and visual schedules!), Aidan was SUPER successful this year, and even said “Trick or Treat” at almost every house!  Well, halfway through, he forgot the phrase “Trick or Treat” and subbed in “Halloween!” – But, you know, samesies!  

I prepared ahead by making Aidan-safe just-sugar lollipops (Recipe here), and snuck one in his bag of loot.  At the end of the night, he enjoyed a lollipop while I went through his stash and picked out what he could keep.  We actually saw a few Teal Pumpkin houses, where non-food treats were given out – how awesome!  Aidan wound up with quite a few things between his school friends and Teal Pumpkin houses, and of course, Teddy’s wonderful Nana.  

The next day, we took Aidan’s candy bucket to the toy store, where I set us all up for success by placing one toy that I knew he’d love in eyesight, and offered him the opportunity to buy it with his candy bucket.  He was so happy and very proudly handed that candy over.  He never once asked for the candy again.  Spur of the moment decision, but I think it will be a new tradition, because it went over really well!

So that was our Halloween in a nutshell.  So much success.  I hope to be able to work more closely with his school in the future to make their celebrations less exclusionary, at Halloween and all year long.