I’m doing that thing you do

You know that thing you do. When you have to stay up all night on a Sunday because there's no nurse, so instead of revising the first draft of your book you get on PubMed and search for every article you can find about pediatric airway reconstruction?

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.

Jack Bauer: Endodontist?

THE CHARACTERS:

Leather-Faced "Pretty" Lady With Crinkly Cleavage And Frosted Lipstick
Perky 12-Year-Old Hygienist
Motherfucking Girl-Voiced Endodontist
Invisible Photographer
Jack Bauer
Me

THE EXT. SCENE:

A sunny, warm Monday morning in suburban Texas. Birds are chirping, lawnmowers are humming, motorists are flipping each other off… it is a bourgeois paradise.

THE INT. SCENE:

Glass. Granite. You're gonna pay $4,000 to fix your tooth? Goddamn right you're going to a place where the dentist chairs have back massagers built into them. 

ACT I

Leather-Face (smiling brightly, batting Tammy-Faye eyelashes): Well, you must be Kari!

Me (offering a hesitant smile that hurts like a motherfucker because of this motherfucking tooth): Yes.

Leather-Face: Have you taken any ibuprofen today?

Me: Nope. I though you weren't supposed to take ibuprofen before any——-

Leather-Face (laughing): Oh, honey. You need to take four of these. Right. Now.

[Leather-Face reaches over, crinkly orange boobs dangling, and drops four generic Advil into a cup. She hands me a small bottle of water]

Me (not crying or running for my life or staring at the orange boobs, but thinking about all three): Awesome. Thanks.

[I sit down on a stylish leather chair/chaise thing and choke down the four pills. I stare at the door and continue to contemplate running. I briefly worry about the state of my own boobs. A door opens, but not the one I'm staring at. This one is behind me and creaks ever so slightly.]

12yo Hygienist: Hiyee! How ARE you?! Come on back!

Me (wondering if I am suddenly on a Japanese game show called "Hi Fine OK"): Hi. Fine. OK.

12yo Hygienist (smiling brightly. Too brightly): Have a seat!

[I sit. The 12yo Hygienist puts a bib on me and tilts the chair back until all the blood rushes to my motherfucking tooth, which begins to have a heartbeat of its own that seems to spell out in Morse code: You. Are. So. Fucked.]

12yo Hygienist (always smiling. Never stops smiling): I'm going to put some of this numbing gel in your mouth. It will help with the injections. Open up!

[She holds out a Q-tip covered in something bright red and sticky and then proceeds to swab all over the inside of my mouth with it. It tastes like poisonous pennies.]

Me: Stupid asshole.

12yo Hygienist: Sorry?

Me (realizing I just said that out loud): Oh, not you! My phone. My NPR app keeps crashing. I was going to listen to some stuff about Chess Boxing during the—-

[12yo Hygienist's eyes have glazed over, but she is still smiling. I wonder if I have killed her with boredom. Or maybe she's a robot and she's gone into sleep mode. The Motherfucking Girl-Voiced Endodontist appears. I hear him before I see him and think, "Wait, did I schedule this with the girl dentist?" I am still nearly upside down in the chair so I see a scrubs-clad crotch as it walks by. Nope, not the girl.]

MFing Girl-Voiced Endodonist (also smiling brightly): Let's numb you up!

[Searing pain, much giggling on the parts of 12yo Hygienist and Motherfucking Girl-Voiced Endodonist as they chat about iPads. There is some whimpering on my part. Time passes. My phone is still being a stupid asshole so I give up on NPR and start playing a little Rage Against Machine. I see people staring at me expectantly, so I turn the music down.]

MFing Girl-Voiced Endodonist: Open, please!

[He's holding something that looks like a tiny latex tablecloth with a square cut out of the middle. Inside of the square is a tiny bear trap. He slides a plastic thing into the left side of my mouth for me to bite, so that my mouth will stay open with very little effort. I immediately begin to drool. Then, I begin to blink rapidly as the bear trap comes closer and closer to my face. The Motherfucking Girl-Voiced Endodonist deftly attaches the bear trap to my sore tooth (which is blissfully numb at this point) and the small blue, latex tablecloth slaps me in the face. He gently tucks part of it under my nose so I don't suffocate to death.]

MFing Girl-Voiced Endodonist (his girly voice chirps): Now the area is secure!

[At this point he positions a giant microscope over my face, points a blinding light in my eyes and reaches full on into my mouth with an array of stabby, whirling, whining machinery. I close my eyes. As he is drilling and hacking and pressing and pounding I hear a camera shutter click and the insides of my eyes go red at the flash. WTF? They're taking my picture? What kind of sadistic, weirdo place IS this? I try to swallow as my anxiety builds. But I can't swallow because of all the shit in my mouth. A drool situation is developing. I long for the days when dentists had spit basins. I really, really need a spit basin. And then…]

12yo Hygienist: Would you like to sit up for a minute? He'll be right back.

Me (in my head – my mouth is full of philips head screwdrivers and bear traps and drool): WHAT THE FUCK? He'll be back? Where the hell did he go? I have an entire Home Depot's worth of tools in my mouth right now PLUS a sinkhole of drool. And why are you guys taking pictures of me?

[I sit up and realize a stream of drool has slid down my face and into my shirt as I've been laying in the chair. For a split second I worry that it's blood and not drool and I think I might pass out. It's at this point that I begin to worry that I am not actually at an endodontist's office. Maybe it's all a front for a covert government operation. Maybe they aren't really performing dental work, they're implanting some kind of device into my tooth. Or maybe they're trying to torture information out of me. At any moment Jack Bauer is going to show up and he is going to threaten me with me a live cougar and the Patriot Act if I don't tell him everything he needs to know – and he means everything. So now I'm thinking that the Motherfucking Girl-Voiced Endodonist has disappeared to work out his torture strategy with Jack Bauer while I am left to ponder my mortality in front of  – hey wait! The 12yo Hygienist has been REPLACED. In her stead is a new hygienist. Or else I have been here long enough for the original hygienist to dye her hair and come back.]

12yo Hygienist/ Possible Android: Oh, here he comes! Back down you go!

[I am tilted back down, but this time I can't see the Motherfucking Girl-Voiced Endodonist because of all the equipment in the way. Hands go back in my mouth. Tugging, pushing, grinding, jamming, weird smells, more flashes from a camera and I begin to sweat. Maybe the Motherfucking Girl-Voiced Endodonist has been replaced just like the 12yo Hygienist. Maybe the person with the ham-sized hands in my mouth is now ACTUALLY Jack Bauer. But why isn't he asking me any questions? Is he waiting to start slowly electrocuting me first? More flashes from the camera. I start to whimper.]

MFing Girl-Voiced Endodonist: Looks like you might have had enough for one day.

Me: mmmmmppphhhffffffgggguurgglee [translated: get me the eff out of here]

MFing Girl-Voiced Endodonist: I'm going to put in a temporary filling and I want you to come back in two weeks, OK?

[What he actually means to say: You have to come back in two weeks. Otherwise, the tiny bomb I've placed in your tooth
is going to blow up your head.]

Me: (nodding, wiping drool from the back of my neck)

[The 12yo Hygienist/Possible Android takes off my bib and helps me stand up. She walks me to the front desk]

Leather-Face (smiling, dessicated boobs shaking with her mirth): So we'll see you in two weeks?

Me (it's impossible to talk when half your face is sliding off): Uh.

Leather-Face: Don't forget the ibuprofen next time!

Me: Uh.

MFing Girl-Voiced Endodonist (throws a wink my way): Call if you have any problems!

Me: Tell Jack I don't know anything! There's probably a mole. Hell, there's ALWAYS a mole. Please don't post any of those pictures you took on the Internet! Also, next time don't use my chest as a tray for your torture tools! What if I had giant, dessicated orange boobs? I hate this place! Aaaaaaahhhhhhhhhhhh!

Me (in actuality, slurring a little): OK.

[I run to my car as fast as I can, slam and lock the door, wipe the drool from my chin and peel the fuck out of the parking lot. I imagine the Motherfucking Girl-Voiced Endodonist, the 12yo Hygienist/Possible Android and Leather-Face all tracking my progress with GPS devices on their iPads. They cackle together and Jack Bauer walks around the corner, removing a mask that has hidden his identity.]

Jack Bauer: We have her where we want her.

Leather-Face: Weeping softly in the P. Terry's parking lot on William Cannon, unable to drink her milkshake through the straw because her lips are too numb to pucker together?

Jack Bauer: Yes. And also the other thing.

MFing Girl-Voiced Endodonist, 12yo Hygienist/possible android, Leather-Face: Hahahahahaha.

TO BE CONTINUED….

Trach clinic ra ra ra

tricky lower lobes
I don't mean tribal earrings
we're talking lungs here

We had trach clinic this morning. It's a tedious day where we see the pulmonologist, the ENT, the RT, the dietitian, the social worker, sometimes an ST (not today), the trach nurse, and other people. Today we were there from 8:30 to 11, which wasn't so bad at all, even if it was still completely exhausting. We've had trach clinics that start at 8 where we don't get home until after 1. (Matt, if you're reading this, you can tell me to shut up. I know you guys have way longer clinics, don't you?)

Of course, as soon as we got checked in we were taken back for vitals and the guy who does them (super extra nice guy who calls me Mami, which I find very endearing) has a drippy nosed cold. My husband was all, "So, allergies are really bad right now, huh?" But, yeah, not allergies. So we're at trach clinic for all of five minutes before we're exposed to g-e-r-m-s. And not just g-e-r-m-s, but RESPIRATORY germs.

Stab me.

We manage to get height, weight, b/p, SpO2, temp done with minimal touching, and the guy did wear gloves and a gown. No mask, though. He should have had on a mask. I should have insisted he wear a mask. I was just horrorstruck and could barely think of anything except "don't touch my baby, even if you call me Mami."

Then the traveling parade of specialists and doctors begins, and my husband and I get some good upper body weight training by trading off who gets to hold Ike and keep him from touching anything.

We saw the pulmo first and he was very nice, as usual. He's happy with Ike's weight gain, and happy with how his lungs sound, but he's less happy with the resistant strep pneumoniae that grew in the last trach aspirate culture. We'll have more of a plan when the new cultures come back. Maybe it's gone. Maybe we treat with Levaquin (which, yikes). Maybe we do nothing. Maybe we go in for some Rocephin shots just before heading to Cincy and keep our fingers crossed.

One of the mysteries we wanted to solve today was to find out why Albuterol and Xopenex cause Ike's sats to drop. Not only do they drop his sats, requiring him to need o2, they also CAUSE him to be wheezy. Dr. F says it can go two ways:

1) Ike has undiagnosed bronchial-tracheomalcia and because those meds are smooth muscle relaxants they cause Ike's airway and lungs to become floppy and collapse in on themselves. He was diagnosed with laryngomalacia as an infant – but that's different. It sometimes goes along with the others, though. We would hope, that with bonchial-tracheal malacia, it would have been discovered before now. When they do the scope in Cincinnati, we'll know if he has this or not. It could be a significant factor in whether we can take the trach out or not.

2) Ike has pockets of atelectasis (small areas where his lungs are collapsed). When the medication is inhaled it opens up little airways to these areas. Usually, nothing will flow to these areas because they are collapsed and no o2 can get in. So when the little airways are opened, o2 flows through them, but has nowhere to go (because of the collapse) and it makes his overall o2 intake inefficient.

We all think 2 is the most likely of scenarios because Ike is notorious for having atelectasis. But if number 1 is in play (which our Pulmo doubts, but, of course had to talk about and scare me with anyway), the whole gameplan could change dramatically.

Because of all this, the pulmo isn't convinced Cincy will do the surgery this summer. He keeps saying
"we'll hope for the best," but he said it's going to be tricky because
Cincy will want Ike's lower lobes clear, and that's where he's prone to
atelectasis. It will all depend on what they see with chest CT. We could have a CT done here to give us a sneak peek, but it would have to be redone in Cincy anyway because they will want their own techs to do it. And because we want to minimize the amount of times Ike has to have anesthesia (and be exposed to radiation, since he's been exposed so much already), we will wait.

So there's that. It's nothing hugely terrible, it's just a bit of reality injected into my hopes and dreams. Fucking reality, you can suck it.

Then ENT popped in, asked why we didn't consider doing the LTP in Austin (When was the last LTP done in Austin? Can't answer the question, you have your answer. Duh.). Then ENT popped back out again.

More visits from other people. More bottles thrown on the floor. More discussions of what happens to our nursing and Medicaid as Ike's plan of care changes. Blah blah blah, why doesn't anyone hand out free coffee and breakfast tacos when we have to go to these things?

I always kind of hate trach clinic.

The kids have r-u-n-n-o-f-t

it's sleep away camp
grandparents' house a good test
of thei(ou)r fortitude

My parents came today to take the wee one and wee-er one off to the wilds of Houston for a week. About four hours after they left my mom called and said, "Yeah, maybe next time we won't let the wee one get a Dr. Pepper when we stop for food."

Haha.

It's going to be a fun week. I mean that both for real, and in a shoulder-punching you-don't-know-what-you're-in-for way. I can't wait to hear all the stories. And I can't wait to see how long the kids and grandparents last. Technically, I guess everyone is coming back here Friday or Saturday, but if they all show up on Wednesday I think the visit will still be considered a huge success.

So now, it's 9:39 pm and it is incredibly quiet in this house. Ike-a-saurus is asleep, the night nurse is due in about an hour, my husband is working at the computer, and no one is popping their little head out of a door upstairs asking for more water or different music or a brighter light or just one more book.

Sadface.

But also, woo!

If only we were able to schedule a nurse for Ike next week. I'd go to a spa or at least a bookstore or something. We do have a nurse tomorrow – so I can have root canal redone. Awesome.

It sure would be nice to be able to get together with my writing group a couple of times this week, too. Ah well, if it happens, it happens. If it doesn't, I have two bedrooms to clean, toys to prune, and a baby to love on, so I think I can keep busy.

Must now go stock up on frozen peas for my face and internal fortitude to not miss the kids too much.

When they get back I want to go to sleep away camp. By myself. With room service. And black-out curtains.

Apologies

Our lack of cable makes it impossible for me to liveblog the MTV movie awards tonight. Alas.

I could liveblog my attempt at cleaning the bathroom, or liveblog what happens when I try to get two overtired children to bed after they've eaten cotton candy, caramel apples, and watched the live Star Wars in Concert show. I could also liveblog what happens when Ike's new night nurse shows up tonight and he's still awake because he took a four hour nap (!) this afternoon.

None of those sound as fun as making fun of Kristen Stewart's sour mug, though.

Looks like it's going to a quiet night of screaming kids and screaming headaches and not enough beer and maybe catching an episode of Spartacus: Blood and Sand, even though in the last episode I saw someone got both their legs chopped off and I decided maybe I don't want to watch that show anymore.

Hey!

Maybe I should have just pretended I was watching the MT Movie awards and fake liveblogged it. You all would've been, "Uh, what show are you watching?" And I could have been all, "The awards show, dummies! The one IN MY HEAD!" And then you would have done that "whoa, she's crackers" look that you do and the laugh track would kick in and then we would go to commercial.

8:25 pm: Lady Gaga looks like a rhinestoned toilet seat on the MIR space station 10 years ago!

8:27: Wait, why is Lady Gaga here? This is the MTV movie awards.

8:29: Did Kristen Stewart just get stabbed? Oh no, wait, she's just smiling.

8:31: Boy, Avatar makes me want to stab people. Maybe Kristen Stewart. Even though that doesn't make sense I bet it made you nod.

8:33: It's a good thing it's still last year so people can make all these Kanye jokes

I could boringly go on forever, but I won't. There are children who need to be yelled at put to bed. Maybe if I paint myself blue and do it in 3D it will be more fun.

Sorry about the lack of liveblog. Maybe I will take up donations so I can get cable. Joking. Mostly.

OK, yes. Children. Responsibilities. Also Spartacus. And beer.

Forgive me, loyal readers. I owe you one.

A great Booklist review for BRAINS FOR LUNCH!

Woo hoo!!! (And here's a link to more woo-hooing)

Brains
for Lunch: A Zombie Novel in Haiku?!.

Holt, K. A. (Author) , Wilson, Gahan
(Illustrator)

Aug 2010. 96 p. Roaring
Brook/Neal Porter, hardcover, $16.99. (9781596436299).

How many stories feature
a middle school with a student body composed of zombies, monsters, and regular kids, and how
often are such stories told through a series of nearly 100 haiku poems?
Loeb, a zombie, is the main
character, and he manages to win a poetry competition, develop a crush
on the
school librarian, and wind up
with a regular-kid girlfriend, all despite his taste for human brains.
Teachers preparing to introduce
their classes to haiku are bound to welcome this outrageous effort.
Let’s
face it: many kids encountering
haiku for the first time aren’t enthralled by descriptions of water
droplets on lotus flowers, but lines such
as “Ivy tendrils fall / Dark loops splayed across my arm / Hair, not
intestines” may pique their interest.
Adding loads of zing are the drawings by cartoonist Wilson, the perfect
illustrator for a story featuring zombies.
A funny, irreverent, and unconventional verse offering that’s sure to
find wide curricular appeal.                   

— Todd Morning