So here's the thing: I can't concentrate on a single damn thing anymore. I can't sit still. I can't work on my book. Ironically, I can't clean the house (because I can't set myself on one task without wandering off to do something else). All I can do is worry and fret and chew my fingernails and wish that an adorable fairy would alight on my arm and tell me that she will cook me dinner, entertain the kids, clean the house, buy me new clothes, and repair a trachea.

While I await the fairy, I've been watching a helluva lot of television. In between phone calls to Medicaid. And in between helping our doctors write letters of medical necessity to Medicaid for various equipment/supplies/etc.

Would you like to know how the letters start off? Like this:

Ike-a-saurus Superstar has been a patient of mine since his birth. He was born at 28 weeks gestation, spent eight weeks in the neonatal intensive care unit (NICU) and has a history of severe GERD, aspiration of thin liquids, laryngomalacia, grade III subglottic stenosis and respiratory failure, requiring a tracheostomy.

Because of Ike-a-saurus' continued high-risk health status, critical airway (over 75% occluded), and issues with gastroesophageal reflux, dysphagia and failure to thrive, it is medically necessary for...

You can see how working on these things all day would weigh on a mama. Not to mention having to talk to 65 different Medicaid staffers on the phone, each of whom tell you something different, none of whom call you back when they say they will, and some of whom are rude for no reason other than because they seem to think I must be a moron, out to scam the system, or personally out to get them. The latter may be true if they don't start being nicer to me.

So... long week. But I did my best to make it not suck quite so hard. Here's how everything went down:

MONDAY:

Medicaid Shenanigans
 

Then some Veronica Mars:

TUESDAY:

Medicaid Shenanigans:

Then some Friday Night Lights:

WEDNESDAY:

Medicaid Shenanigans

Then some X-Files:

THURSDAY:

Major Medicaid shenanigans:

And then some 30 Rock:

FRIDAY:

No one from Medicaid ever called me back, so I took the kids out for drinks

And then out to walk it off (I don't know why this is sideways, I can't turn it around. Booo.):

And then my author copies of BRAINS FOR LUNCH came (again, WTF, sideways?):

So Friday was a bit better.

And now it's the weekend. I remain on my quest to track down as many Riggenscorns and Logancorns and Muldercorns and LizLemoncorns as I can. They are surely not as elusive as the tiny fairy who will solve all my woes, and they work quite nicely at distracting me.

Hooray for television!

And hooray this week is over!

Some nights I find myself amazed at simple things. When I admit to being amazed by them, it makes me sound like a real weirdo.

Like tonight I am amazed that time just moves forward. You can't stop it. You can't hurry it. It's just a steadfast march. Sometimes it seems like it's carrying you forward in a flash flood, sometimes it feels like you're in a tar pit. And yet, there is always forward progress.

Want to stop time? Too bad. Want to pause it for a while? No go. Want to speed it up? Can't do it. Want to close your eyes and ignore it? Impossible.

Gravity, sugar ants and Time. Omnipresent.

Tonight I feel like I'm on a moving sidewalk. It's not going fast, it's not going slow, it's just going. Going going going. Taking me to a future that's clouded over in some kind of movie set mist. What's behind the mist? Won't know til I get right in it. But I'm getting close to it because I feel the spray on my face.

The Spray of Things to Come.

The Spray of the Future.

The Aquanet of Fate.

This post is beginning to sound like a conversation between a pothead and himself while he eats pancakes at Denny's at 3 am. That's usually a sign I need to stop contemplating Things and start thinking about watching a TV show. Time might not actually pass faster that way, but it will seem like it.

Veronica Mars, Season One, I command you to make me stop talking like an idiot!

I spent the last week making a book trailer, having nightmares about missiles trying to blow me up, chasing kids, not sleeping well, drinking way too much tea (wishing it was coffee), watching this show, Kidnapped, on Netflix (and wishing that in my constant angst I could at least have apparently clean, scoop necked, comfortable-looking clothes like Dana Delaney), arm wrestling with iMovie '08, not eating salted praline polvorones because I forgot to order some (dammit), and constructing wildly complicated plans for a very small amount of fresh figs I have.

Here's a link to the book trailer.

Here's a link to the TV show.

Here is the tea. (And sometimes this.)

Here are some scoop neck shirts I do not own, but would like to. (Some of those might be v-necks.)

Here are the polvorones. (Oh, MAN these cookies are good)

And the fig plans.

Super tired. Tomorrow is Friday. Maybe I'll be awake enough at some point to write in complete sentences again.

Ike de-diapering from Kari Anne Roy on Vimeo.

I was getting out of the shower this morning, blind without my glasses, and I hear the wee-er one shout, "Say 'Cheese Nipples'!" And I immediately think, "cheese nipples? What the heck is she talking about?"

Once out of the shower, though, I squint and see she has my phone. Pointed directly at my naked self.

Click.

What ensues reminds me of a scene in a movie, where I slap the phone out of her hand (not in a mean way, but in an OH SHIT way) and it clatters across the bathroom floor. There's a mad scramble, 4-year-old vs. naked mommy, clamoring for the phone. Luckily, in my post-shower-i-ness I'm slippery and can skid across the floor like a seal. A naked, dripping, blind seal. There were boobies everywhere.

I grab the phone and my glasses.

Not only is there a picture of my nipples saying cheese, there is a picture of my nipples saying cheese IN THE TYPEPAD APP. That's right. She somehow opened the Typepad shortcut on my phone, took the incriminating photo and was seconds from publishing my nipples saying cheese to the whole wide world (with a direct link to Facebook and Twitter, of course, because social media leaves no one out).

You guys.

That was a narrow escape.

A narrow, horrifying escape.

And the story of how the children's book author published photos of her boobs online is NOT a story you'll see on the news tonight. But only by sheer luck. And the ability to not think twice about flinging an iPhone across the room like it is on fire. 

Say cheese!

This is the picture she took as I slapped the phone from her hand.

We got an itemized bill in the mail the other day for "trach tube ho". Now, I know I get testy with the medical supply company, but there's no need for name calling.

Of course the idea of a Trach Tube Ho is as appealing as it is, you know, unappealing. Lots of unsavory jokes have been floating around here because of this, most of them dealing with suction machines. But I digress.

When one receives a bill in the mail for a Trach Tube Ho, one immediately thinks, "Hey, Self? This calls for a rap." So I've been busily trying to devise something that is at least Natalie Portman-worthy.

Here you go, my friends, the Trach Tube Ho rap. If someone brings me a Blackberry Smash or two, there is a high likelihood I might even make a video (and/or soil myself at some point).

Trach Tube Ho (what?)

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

Let's be naughty.
Let's be naughty.
Let's be naughty, ho.
But not until you've cleaned out.
My air compressor hose.

Get your hand up in there, bitch.
And shake out all the slime.
We get pseudomonas up there.
All the fuckin' time.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

See those can-i-sters, in my bulging cab-i-net?
My DME.
Charges me.
A fuckton for that shit.

Sometimes I hit a wall.
Sometimes I throw a chair.
Sometimes I make a phone call and I swear and swear and swear.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

She might just fuck you up.
This crazy trach tube ho.
By screaming at you con-stant-ly
Through her weepy stoma hole.

She ain't no normal fucked up bitch
Her crazy's shined and beveled
She's taken all this trach bullshit
To the next fucking level.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

Somebody get Nystatin.
Somebody get the gauze.
Somebody get the KY jelly.
Out the baby's jaws.

Imma hold you down.
Imma tilt your face.
Imma count to three.
Cause it's time to obturate.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

So don't you go a-thinkin'.
She's all special needs
Just cause she throws loogies
Out the neck hole that she breathes. 

She's a very special ho.
Who loves her Medicaid.
Even more than she enjoys.
Getting fucking laid.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

It's all about the money, bitch.
Saving up some scratch.
To finally get the damn trach out.
Before them germies hatch.

We gotsta rustle up some Cotton
To get busy with this nasty.
It's about fuckin' time.
For that larynogotracheoplasty.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

I got your trach tube, what?
I got your trach tube, what?
I got your Trach Tube Ho and she's crazy in her nut.

The wee-er one is still awake, up in her room, listening to the new Beatles CD she got, and looking at pictures on her new "iPhone" (an old photo iPod I cleaned up for her).

Strike that, now she's downstairs with me, jumping on her new little trampoline.

I was hoping the little trampoline would be a good thing especially when hurricanes hit and we have four straight days of rain and our backyard has turned into a sinkhole the size of the Sarlacc. I had not counted on the little trampoline having a siren song that would call her downstairs at 10:47 pm.

She had a lovely tea party today with friends, complete with strawberry tea! Blueberry tea! Mint tea! And Darjeeling. We had scones made with currants and scones made with cheese and scones made with spicy ginger and cranberries. Then, there was much playing on a giant armadillo and we came home for a rest.

The rest, I think, is why we are in this jumping predicament right now. Newly minted four-year-olds should not sleep until 4:30 pm. Noted.

It was a good day, a sweet day. I can't believe my baby girl is four!

Now she better get her butt to bed before my misty-ness wears off and I feed her to the Sarlacc.

What? You don't do that?

Yeah, it's probably something I should stop doing, too.

And yet, something interesting always pops up. Like this. Basically, it's an abstract saying that infants who have severe, symptomatic subglottic stenosis (like Ike), can have the laryngotracheoplasty surgery as soon as they are diagnosed - avoiding the tracheostomy completely - with a comparable outcome to babies who are trached, get bigger, and then have the surgery.

Well WE were never told that was an option. I'm sure, though, there are very few places where it is an option. It really makes me think, though, that as more and more babies are born early and spend time in NICUs, the reality of acquired subglottic stenosis is always there. It may even increase as more babies are saved. This makes me wonder if the ENT world is ready to be more aggressive in its treatment of subglottic stenosis. If you know it's going to happen, and you know it's potentially going to get worse, don't you want to have the doctors and systems in place to offer choices for treatment? It may be easy for an ENT to walk into an operating room, trach a baby and say, "See you in three years for possible decannulation!" But it's not so easy for the family - and especially not easy for the child. Suddenly you're faced with the potentialities for life-threatening health problems at every turn, developmental and physical delays because of hospitalizations and illnesses, astronomical healthcare costs (both emotionally and literally), etc. All things that could possibly be avoided by fixing the problem immediately, instead of traching and waiting.

I know not every family would agree to major airway surgery on a 6 month old baby. They might prefer to have a trach placed with the hopes that the child could outgrow the stenosis. What I don't like, though, is being forced into that decision because there are no other choices offered.

Could Ike have had the LTP as an infant and avoided all of this time with the trach? I don't know. Would we have decided to go ahead with the surgery at that time if we had been given a choice? I don't know. It was a terrible, scary time, and we were getting a variety of diagnoses from a variety of well-meaning but in-over-their-heads doctors. If I knew everything then that I know now would I have insisted on some kind of magical airlift to Cincinnati Children's? Of course.

The study that I read tonight was submitted for publication four months before Ike was born, based on data gathered from Cincinnati.

If we had seen an ENT familiar with symptomatic subglottic stenosis when Ike first presented with stridor, there's a chance we could have had an airway repair before he got so sick that he stopped breathing. There are a lot of what-ifs when you read articles like this. A lot of 20-20 hindsight.

As a mama, though, I like to educate myself and to be educated about the things happening with my children, and the decisions that need to be made (or might need to be made). But you can only educate yourself about so much, unless you have a time machine or a note of dire warnings left on your pillow from your future self.

It's frustrating to read articles like this, to see a divergent path from the one we took. We weren't aware of the available paths, though, and I think even if we were aware, the path in this study would not have been offered to us. So that begs the question, who, without that time machine, is going to pack up their healthy but stridorous just-out-of-the-NICU child, and take him 1100 miles away when the doctors at home say he's fine? Would I have been crazy enough to do that? I don't know.

There's a lot I don't know. And a lot I second guess. And a lot I what-if. Especially on Sunday nights when I should be revising instead of reading PubMed.