Saturday, July 27, 2013

A weekend away

I think the idea started out kind of like this:

Tom: let's drive until we want to slit our wrists, then check into a hotel room that our darling son will trash in nanoseconds before declaring it "not home" and thus unacceptable for sleeping purposes. Perhaps also we might take turns seeing who can scream loudest, but Aidan will usurp all available turns. 
Me: OMG yes please, let's do that!
Aidan: As you wish, my lieges!

(Note: my memory of this conversation may/may not be colored by subsequent events. Probably not though.)

But really, we needed a little time away, and Tom has been wanting to get back to see Penn State for a while now. Our normal bag of tricks is starting to wear thin on Aidan, so I thought he might enjoy a change of scenery.  See photo below, in which Aidan is only slightly more than thoroughly unimpressed.  (Why I thought that my son, who can't handle transitioning from his room to the living room, would enjoy a change of scenery is really anyone's guess.)

What I can say is that we are pretty much pros at this whole packing thing. All feeding supplies and meds in a Thirty-One medium utility tote, fridge meds and ice packs in a lunch break thermal, clothes and special pillows (we each have one, actually) in a large utility tote, toys and crayons in a littles carry-all caddy, and we're ready to roll. Also? Stylish. 

Worst part of travel? The boy doesn't sleep if he can see us. And this room isn't exactly palatial. 

Sleep is for losers. Team Shields? FULL OF WIN!

Tuesday, July 16, 2013

What to Expect When You're Scoping - May 15, 2013

I'm not sure if I've ever really posted about scopes.  We've done a few now, and I remember before the first one, I was so nervous.  I had no idea what to expect.  Aidan was not even a year old when we did his first scopes - and the thought of surgery for your infant is probably the most nerve-wracking thing ever. 

My disclaimer - this is how they go for us.  In our world, a scope is an endoscopy and a colonoscopy.  So the prep and the experience are specific to that.

My other disclaimer - Yes, I am aware that this scope took place two months ago.  I'm a busy mommy.  I meant to write about this sooner, but life happens.

Step 1: We visit our GI and agree that we're going to Scope.  Maybe it's because we've been trying a new food.  Maybe it's because we haven't changed anything but his symptoms have flared up.  Whatever the case, the scope is ordered and we are told that scheduling will give us a call.

This happens within a few days, which is exciting, but then they smack you with the news that the next opening is in something absurd like six weeks.

Maybe it would be sooner if we scoped down at Main Campus... I don't know...  But we always scope at Exton.  Going down to Main Campus is really a bigger adventure and we try to avoid it.  I think it tends to bring me flashbacks of inpatient stays.  Main Campus just *feels* different to me. 

Step 2: We wait.  And we try to change nothing.  And that's nowhere near as easy as it sounds.  If he accidentally eats something, the whole scope could be worthless.  If he gets sick, he may not be healthy enough come scope day.  OR, he may seem healthy enough, but they may refuse him anyway.  See Step 3.

Step 3: About two weeks before Scope Day, CHOP calls to discuss his medical history.  They ask a slew of very important questions, and it's really important to be truthful.  But be careful not to be too truthful.  Example - it's important to tell them that he's used his inhaler within the past six months - because this means he needs to use it in the days leading up to and on the morning of his surgery.  It's important not to volunteer that he has a runny nose today, two weeks before surgery, because they will threaten to cancel surgery.  I am not even joking.  Unless the kid is critically ill, keep your mouth shut.  They will examine him the morning of surgery and if he's too sick to proceed, they won't.  Cancelling two weeks out because he might be sick when the day comes around is just silly.

Step 4: We wait.  Notice a trend?  We wait, we continue trying to change nothing, and we hope against hope not to get sick.  This is where I get psychotic about people coming to visit us while sick, or sick-ish, and I tend to kind of hide out in hopes of keeping him healthy.

Step 5: Two or three days before the Scope, CHOP calls to go over his prep.  I'm not sure how unique our prep is because Aidan is not an eater, but here's what it looks like.

Day -2: Full Liquid Diet.  This means formula only, which is all he ever gets anyway.  No biggie.
Day -1: Clear Liquid Diet: There would be more options for eaters (like broth or jellow or sprite), but for Aidan this means just unflavored pedialyte, starting at 8am and continuing all day and night.  Thankfully, we can tube it in, because unflavored pedialyte is absolutely disgusting and there's no way on earth he'd drink that all day.
Day 0: NPO after 4am.  I programmed the pump so that the clear liquids from Day -1 ended at 4am.  I have a serious love/hate relationship with the pump, but this is one of the times that I love it.  A little bit of quick math lets me figure out how to stop feeds when I need them stopped, no waking up needed.

Alas, my smug slumber wouldn't last long, since we had to wake up at 5am to give him an enema.  I took no pictures.  You're welcome.  I'm not sure how this will work when he's out of diapers, but that's not my worry for today.  It's easy peasy lemon squeezy with a diapered kiddo.  By which I mean he writhes and screams and clenches things that I don't even know how to clench, and for the love of all things holy, why are we doing this at 5am!?

Proof that we left on time!
When we arrive at CHOP, we change into bright yellow CHOP jammies and I get the iPad out to keep Aidan entertained while we wait.  Surgeries happen by age, and he's still young enough to be very early in the morning.  Our arrival was scheduled for 6:45am.

When we are called back, Aidan gets a quick checkup to make sure he's healthy enough to scope.  Happily enough, he is.  Anesthesia comes to talk to us about their plan (for some reason, there was a mix-up and no one ordered pre-meds for him.  With Aidan's severe anxiety around hospitals, pre-meds are a must and I refused to proceed without them.  So there was a slight delay, but we did eventually get some Versed on board.).  The GI performing the scope also stops by to talk about symptoms and anything that may be new or different since we last saw him.  By now, Aidan's getting pretty loopy from the meds, plus it's ridiculous-o'clock, and we Shieldses sleep in.

I think he's a cute little druglet, don't you?
The scope takes something like 45 minutes - it would be shorter if it were just an upper or just a lower - but since it's both, and since they have anesthesia to worry about, I end up sitting there FOREVER while parents of ear tube patients come in and out of the room like there's a revolving door (seriously - ear tubes are like a twelve second procedure)

When the doctor finishes up, he comes out to see me and tells me how great it went.  He always has some pictures to show and he tells me how the scope went visually (our scopes are always visually beautiful, no matter how many eosinophils are present).

I do have a couple of cool pictures to share from this scope - it must be his first scope since getting the feeding tube, because we definitely don't have any pictures like this from past scopes!
This is the balloon that holds the button in place, right on the inside of his stomach wall.

This is the tube that goes down into the jejunum and feeds into Aidan's intestines.
As I'm gazing fondly at Aidan's jejunum, a nurse comes to fetch me and inform me that Aidan's ready to be seen and adored.  And when I get to him, someone's clearly already been adoring him and his puppy.  Puppy pup is wearing Aidan's beloved socks, and Aidan is all tucked in and high on life (and oxygen).

It is always very hard for Aidan to wake up.  I've heard that they wake up more easily without pre-meds, but for us, it's just not worth it.  I talk with the nurse for a bit while he snoozes - she goes over how the procedure went (fine), and what I should expect when we get home (really nothing special, he might be groggy but overall he'll be just fine, and he'll be ready to go to school tomorrow).  We turn off his oxygen, and it's time to wake him up.

I start by untucking him and starting to let in the dreaded cold air.  No effect.

I hold him, I tickle him, nothing works.  I finally have to strip him down and get him re-dressed.  He's awake.  And he's miserable.

How could you dooooooooooooo this to me?!
 His tummy hurts a little bit because they introduce some air during the scope - and as a family, we tend to be very emotional as a side effect of anesthesia - but he's really none the worse for wear.

In this particular case, he cried all the way home, at which point he and I both promptly fell asleep.  But when he woke up?  Good as new!

So really, that's it.  That's a scope.  The last piece is waiting another week or so for the GI's nurse to call with results.  That's always the longest week of everyone's lives - and I have to imagine it's even more nerve-wracking when you're waiting to find out if you get to keep all of your newest foods! 

I'd love to hear more about what scope days are like for you!

Monday, July 15, 2013

Update - height and weight? We have none.

Things have been chugging along, mostly at status quo, for a while now.  Daycare has been an adjustment for all of us, but he's fallen in love with his teachers (one of them in particular - you should see him blush when he hears her name!) and has started joining in with the other children while they play.  He's even made a best school friend, Anderson - another quiet, gentle soul like Aidan.  I have his class picture on my phone, and Aidan loves to zoom it in to Anderson's face and say "It's Essin!  Friend!"

My heart couldn't be happier.

I did take him to the doctor a couple of weeks ago for a growth check, and the results were underwhelming, as usual.  I'm pretty baffled - he is fed 18 hours per day, his diet is absolutely nutritionally complete, and he's not throwing any of it up.  How isn't he growing?!  We have a followup with Endocrinology on the 24th but I'm not confident that they will do much since they really brushed off our concerns before.  It's so easy to forget when you see him every day, but when I see him next to the other little boys his age, it's obvious.  He's so tiny.  At 2 1/2, he still has plenty of room in his 18m sized clothes.  If he didn't wear such fluffy cloth diapers, he'd probably still be in 12m clothes.  At the time of this posting, he's 2 years, 6.5 months old and he weighs 24lb 9oz.

I love him to little tiny bits and pieces, whether he's 4'6" or 6'4" - but I'm desperate to know what else I can do to help him reach his potential.  I just want to know that we're doing everything we can for him.  He deserves everything we can do and so much more...

We had a little bit of drama last week after a particularly traumatic tube change - but we'll get to that later.  I also have news to report on the food trial front - if you use the word "food" very loosely.  For now, here's little man doing what he does best - trying to look so cute that no one remembers he's a zillion years too old for a pacifier.

You can't possibly take away this binky.  I'm only 3 months old.