The Night Before Scope Day

'Twas the night before Scope Day, when all through the house
Not a creature was stirring, not even a mouse.
The feeding bag was hung from the IV pole with care,
In hopes that the surgery date soon would be there.

The little boy was nestled all snug in his bed,
While visions of Blue's Clues danced in his head.
And I with my pillow, and daddy with his CPAP,
Had just settled our brains for a few hours’ nap.

When in the boy's room there arose such a clatter,
I sprang from the bed to see what was the matter.
Away to his room I flew with a jump,
Tore open the door and silenced that pump.

The moon on the crib, all cluttered with toys,
Gave the luster of mid-day to the face of my boy.
When, what to my wondering eyes should appear,
But a kinked feeding line, somehow wrapped 'round an ear.

With a looping figure 8 tied in such a bow,
I knew in a moment, toddler hands made it so.
More tangled than a rat's nest, this feeding line was,
The pump sounded and alarmed, and continued to buzz!

It Beeped! It Buzzed! It Alarmed and it Sounded!
It Blared! It Bleated! My head, how it pounded!
Inside the room, and out in the hall!
Now Silence it! Silence it! Silence it all!"

I knew that I'd bought myself but a minute or so,
But I could act quickly - I'm really a pro!
So over to the crib, my nimble feet flew,
To shut down the pump, and disentangle him, too.

And then, with a rustling, I heard in the bed
The stirring of a child, as he picked up his head.
As I drew nearer the crib, and was turning around,
Up popped my Aidan, with barely a sound.

He was dressed all in fleece, from his head to his toes,
And formula had soaked his jammies and bedclothes.
A bundle of toys surrounded the chap,
And he seemed to be ensnared in a feeding tube trap.

His eyes-how they twinkled! His dimples-how merry!
His cheeks were like roses, his nose like a cherry!
His droll little mouth was drawn up like a bow,
And the rivers of formula were as white as new snow.

Scraps of medical tape he held tight in his hand,
As the puddle around him continued to expand.
A sweet little face and a little round belly,
That shook when he laughed, like a bowl full of jelly!

He was happy and plump, (the tube was doing the trick),
And I smirked when I saw him - this boy's clearly not sick!
A wink of his eye and a twist of a smile,
I should have known then, we'd be up for a while.

I spoke not a word, but went straight to my work,
Unwinding the tubing, and mopping the murk.
Laying him down in a clean and dry bed,
Backing out the door as he rests his small head.

Then he sprang to his feet, blankets and pillows askew,
As out of that room this tired mama flew!
But I heard him proclaim, as I ran out of sight,
"More Elmo Brush Mommy!  No more night night!"

No news is good news...

I haven't written in a while.  I thought it was because I had nothing good to say, but I realized last night that it's really because I had nothing bad to say.  Things are pretty stable - we're just treading water until Aidan's next procedure - scopes (upper & lower) with biopsies on May 15th, as long as we can get and keep him healthy by/until then.

On the feeding front - he's on 18 hours of continuous feeding, which translates to something like 8am to 5pm, and then bedtime to wakeup.  So he gets an hour or two off the backpack in the evening, which he really enjoys.  We're feeding Elecare - and (knock on wood) he seems to have leveled out a bit on that too - so maybe he just needed to adjust?  I don't really know, but I do have some hope that this scope will go well.  It's nice to have hope - because whether I'm hopeful or hopeless, the outcome will be the same.  It's nice to have hope.

On the care front, I don't think I've mentioned this, but Megan is moving on.  It's not surprising to any of us, but Aidan obviously has no idea.  He's going to miss her and the girls - a lot - but they are doing what's right for them and we support that.  We don't know yet what we're going to be doing with Aidan - I think having a nanny was the difference between keeping my job and losing it during this last hospitalization - but we'll find the right answer.

What we're running into is that the larger daycare centers are unable to do anything with Aidan's tube due to their corporate regulations.  The smaller (non-center) daycares are willing to learn but don't all give me the same "competent" feeling.  Bringing in a nanny (not a live-in) is also an option.  We are just checking out the daycares in our area first, because I really like the idea of his being with his peers instead of at home alone with a nanny.  He's doing so well with Teddy and Chase that it breaks my little heart to realize he won't have them after June.

This scrumptious little pigpile is Aidan's little piece of Heaven

We are also waiting to get a Social Worker assigned to us to help us figure this all out.  I don't know what kind of help he/we qualify for, but they may have more ideas than we do.  It's all up in the air right now but I trust that we'll land on a solution.

April 5th - Visit to CHOP Exton

It was a really underwhelming visit to CHOP Exton.

We got Aidan's latest Stats, which were - you guessed it - underwhelming:


Weight - 10.801kg - 23lb 13oz - 3.4%
Height - .816m - 32" - 1.3%
Head - 47.5cm - 18.7" - 15.7%

And then we spoke with Dr. Liacouras about where we are and what to do next.  Since Dr. L is a bullet-point kind of guy, I'll give you a bullet-point kind of update.

• J feeds are generally being tolerated well.  We will step up to goal of 60mL/hr over 18h. 
• We do not know whether or not Elecare is causing Aidan problems.  We cannot know this until we scope.  Behavior suggests that Elecare is not well-tolerated, but scope is
• We agree that we should scope as soon as safely possible.
• Dr. Liacouras will check in with Anesthesia to determine how soon after hMPV we can scope Aidan.
• We will call Dr. Liacouras's office this week to update them on Aidan's progress with J Feeds.

As far as how we're doing - it's really hard to say.  Mostly he's doing well - he's not throwing up (he's nearly physically incapable with the placement of the GJ Tube.  But he's still struggling with symptoms that leave me wondering whether this formula is the best thing for him.  He's awake a lot at night, growling and grunting and crying.  He's extremely emotional - which is either a symptom of being a toddler, or a symptom of a reaction.  We just don't know :( 


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Update  - 4/12

Things are pretty much the same, except that Aidan seems to be over the cough and runny nose - so I've been pushing Liacouras harder to order the scope.  I finally heard this morning that the orders are in, so now we just wait to hear from the scheduling department (I should hear by Monday or Tuesday) and hope that he passes muster with anesthesia.