T-minus seven days

Yesterday was the pre-op appointment, which I honestly had not given a lot of thought to.  They told me we would be meeting with one of their RNs, and so I figured it would be a quick assessment of vital signs, a review of recent medical history and we'd be done.  Especially because when we've done them in the past (in MN), they were always at our ped and I made a bigger deal out of it than it needed to be. Matt kept asking me this last week when they were going to take the final measurements, and I had no idea.

We skipped class and decided to run on our own ahead of the appointment so we'd be sure to make it on time.  Which means, of course, that we still barely made it on time.

There was a considerable lack of cooperation when it was time to load back into the car.

The ocean!  Remember, you get to run next to the ocean, every day.

They had us wait in the main waiting room, instead of in the pediatric waiting room, which had Bug all sorts of confused.  I'm honestly not sure if all toddlers have borderline savant-like memories, or if it's just her, but I was being toddler-assaulted at a rate of, I swear, eight questions a second.
"Are we sitting in the living room, Mom?" (the waiting room chairs look like arm chairs)
"What are the people doing, Mom?"
"Is Elmo here, Mom?" (when the pediatric wing was under construction, six-plus months ago, they had some toys in the corner of the main waiting room, and there was an Elmo toy there, once)
"Are the other toys here, Mom?"
"What is his name?" (person sitting near us)
"What is her name?" (person sitting near us)
"What is he doing with his foot?"
"Can I have a snack?"
(Someone's name is called) "Is it our turn now, Mom?"

I tried to distract her with magazines, but it only worked long enough for me to take this picture and simultaneously look like an asshole for repeatedly attempting to arrange said picture in a loud, echoing waiting room full of elderly, half-blind diabetic patients.

All she understands and cares about right now is football and the Packers, so an issue about basketball was a total bust.

They called for us soon after, which I was surprised and relieved about.  But despite excitedly asking if it was our turn every other time we heard a name, she (obviously) did not want to budge when it actually was our turn.  I thought the nurse would give me one of those friendly, knowing smiles as I tried to corral us toward her, but she just stared, emotionless.

Bug walked right up to her and asked her what her name was, and she seemed to soften enough to at least tell Bug that she thought she was cute, to which Bug said, "Thank you!"

We were led back into this closet-like office, full of posters with helpful tips for self-diagnosing sleep apnea and most commonly used herbal medications.

She started with questions on Bug's medical history, and it seems so weird now, this ability I have to just gloss over it and spit it out in 90 seconds.  What used to make me cry now just makes me sigh with annoyance.  I even know now exactly when to pause to let whoever I'm talking to finish writing.

Then she asked me what Bug's pediatrician thinks about the surgery, and I froze.  Shit.  Face palm.  We never asked her pediatrician.  "We, uhh, actually never asked her pediatrician about it," I told her, feeling no better than all of the overweight, horribly dressed, unattentive and obviously non-college-educated parents I've seen and judged for sport while trying to kill hours in hospital and clinic waiting rooms the last two and a half years.

I wanted to crawl in a hole.  She obviously didn't get any warmer after that comment.  How could we not have asked her pediatrician??  Are we that dumb?  Her neurologist knows she's having the surgery, her physical and occupational therapists know, her teachers and school know, my entire fucking stroller strides class and whoever reads this blog knows, but not her pediatrician.

Later, as I tried to rationalize this with Matt, I realized that we are in this tricky (and icky) position with her health care, which is of course not helped by the fact that I've hated all three pediatricians we've tried while we've been here.  All this craziness happened when we were in Minneapolis, and her ped at the time was included as part of the medical team, and was one of the doctors who saw us daily in the PICU, etc.  And then we slowwwwwwly moved our way toward the bottom of the Closely Watched List, and graduated to monthly specialist appointments and only needing to see the ped when we had an ear infection or needed shots.

And then we moved, and her ped out here, who was recommended to us because he deals with "medically fragile" children (which Bug is not, but we liked that he understood complex cases), took one look at her and was all, "I'm not concerned."  And why should he be?  She's doing fine, relatively speaking.  So we've seen him like maybe twice, and the rest of the time when she's had pink eye or hand, foot and mouth disease (TWICE, DAMMIT) we've seen other doctors, or terrible residents.  So basically he doesn't feel part of the "new team," and doesn't have any first-person experience with our Dark Period.

I totally catch her doing an eye roll as she pulls out some form from one of her drawers with the words "URGENT RESPONSE REQUIRED" and starts filling it out, asking me for her pediatrician's information.  Right.

They need to take Bug's blood pressure.  I figured we had successfully beat our fear of The Cuff of Death a few months ago, but apparently toddler savant-memory is selective.  Because before the thing has even tightened on her she is screaming like she hasn't eaten in days and is watching me throw half-eaten donuts out the window on the highway.  And THEN despite being SO EXCITED about wearing a (medically unnecessary) Band-Aid the entire morning, flips her shit even MORE when they put the little sticker on her finger to measure her oxygen levels.

After this, it's time for the nurse to patronizingly walk me through what to expect the morning of surgery.  She doesn't tell me anything more than what she's circling on the literature she's sending with me.  I need to make sure, though, if we need or have to be present when they put her under, so I ask and she immediately snaps at me, "I already told you about that!"

I respond, while also lightly touching her leg (???), that I know she just explained it to me, I'm just clarifying.

"No! You won't be there.  We don't want to take care of you, too."  Thanks?

And then there's more. "You know, I spent some time overseas.  Thailand, to be exact," she says to me in a bizarrely hushed tone, and I have no idea where she is going with this.  Is she going to chastise me about how lucky I am to have medical care in America?  Is this like refusing dinner and being told there are starving children in Africa?  If this is a super gross story she's going to have to take care of me right now because I'm a Fainter.

The story continues about how in Thailand, they have the parents restrain the children while undergoing general anesthesia, and they don't even sedate them first (i.e. load 'em up on Valium).  "So the parents are literally holding their squirming, kicking and screaming child while they're trying to put them under," she says, staring me in the eye.  Is this some kind of sick game?  My brain, of course, has added a dirty and unsanitary surgical room to the scene.

(I suppose at this point I will explain that we will be with her when they give her a sedative, but we will not be present when they actually put her under (thank GOD).)

All this time she's been dialing her phone on speakerphone, trying to get someone to pick up.  Due to Bug's history, she wants us to see anesthesia today, and see if they feel comfortable doing the surgery at the eye center, or if we need to do it at the Children's Hospital, "where there's an intensive care unit right nearby."  I'M SORRY, DID YOU RECENTLY TAKE SOME CONTINUING EDUCATION CREDITS ON HOW TO INCITE OBSESSIVE AMOUNTS OF MATERNAL ANXIETY?  OR ARE YOU JUST NATURALLY THIS AWESOME?  Then she gives Bug a surgical hat to wear "for fun" and I almost completely lose my mind.

Too soon.  Too soon.

She finally gets ahold of someone and we're on our way upstairs via an elevator.  Nurse Jekyll disappears and out comes Ms. Hyde who asks Bug if she wants to push the elevator button.  I'm shocked!  Bug is of course very excited, because I usually don't let her.  But then she walks onto the elevator and asks yells at the woman already on the elevator to "STEP BACK" so that Bug can push the elevator buttons and I'm back to feeling scared and awkward.

She tells us we may have to wait a half hour for the anesthesiologist, so we park ourselves in some chairs and I pull up Elmo on my phone.  Less than five minutes later, out walks a burly, hairy man who I learn may or may not be the one (cue dramatic music) RESPONSIBLE FOR HER LIFE in a week.  He sees no issue with us doing it at the surgery suite in the eye center, so we're good to go.  It's at about this time, or perhaps a little before, that I realize we also are to see Bug's ophthalmologist while we're here, which makes me cringe.  It's now almost noon, and he is never, ever ever ever EVER on time, ever.  We always grab the first appointment of the day when we see him, and we still end up waiting almost an hour.  Taking a midday appointment with an unfed toddler and an unprepared (and stinky and unshowered post-run mother) is probably not on anyone's wish list.

But we go along because we're here, and we need to do it.

They actually got us back into an exam room rather quickly.  The tech started measuring Bug, and we tried to get her to read the pictures on the screen.  Problem is that Bug remembers the four pictures that they use most often for her (airplane, hand, teddy bear, birthday cake) and just starts calling them out, knowing she'll get the "right answer" at some point.

The tech leaves.  We wait twenty minutes.  Another one comes.  She leaves.  Fifteen more minutes. Someone else comes, leaves.  A half hour.  Another doctor we've never seen before.  I get it, that everyone who's anyone is coming to look at her, just to make sure.  Which is great!  Like I'm glad, let's do our due diligence   But as I said before, I am woefully unprepared, and it's now almost 1:00.  Bug is exhausted and hasn't eaten lunch.  It's enough for her to play along for these appointments when it's one tech and then the doctor.  She's now had four different people shine lights and hold up prism after prism to her eyes and bark instructions about what to look at while covering one eye and then the other.      And in between the only entertainment is on a screen twenty feet away showing either Cars or The Incredibles with the volume stuck on barely audible, both of which she has no interest in.  I am stressed and overwhelmed and all I want to do is hide in a corner with my phone and obsessively refresh Facebook.  But I can't, because it's just me, and the phone's ability to play YouTube episodes of Elmo's World is what's keeping us from completely imploding.

She wants Goldfish which, luckily, I have.  Immediately there are greasy streaks all over the exam chair she's sitting in (let's just gloss over the fact that she fell out of said exam chair not once, but TWICE, screaming, because she didn't heed my warning to sit still on her bottom, and I didn't feel terribly sorry for her).  I try and pick up the larger crumbs that fall on the floor, and try not to steal too many for myself because I'm starving as well.  Then a Cookie Monster segment comes on and she looks up at me and says, "should we eat these like Cookie Monster??" like it's the greatest idea, ever, and starts nibbling on the Goldfish like a wind-up set of chattering teeth, which, you know, sends crumbs into every possible nook and cranny (and expensive medical equipment) within ten feet.

As we sit and wait for the doctor, I think to myself, how do you become a doctor of his stature and fit your head through the exam door?  All of these people are clamoring to see you for your expertise, every single day.  It has to be a heady feeling.  Or maybe he doesn't perceive it that way?  I don't know how he couldn't.  I think that I would, a bit.

They probably had to layout his business card separately from everyone else's in order to fit in the required acronyms.

FINALLY he comes in!  Wahoo!  I really, truly like him, a lot.  He is not concerned at all about the fact that I'm sitting in the "doctor chair" and Bug is bouncing around, and without a second glance sits down himself in the Goldfish-covered exam chair.

"OK, so which do you want to go over first?  The most-scary situation that has the lowest probability of happening?  Or the less-scary situation that has a higher probability of happening?"

We've been through some of these before, when we've had one of our obsessive-question-answering appointments, but I go with the most-scary first, and it's the risk of general anesthesia.  He tells me again that the risk of something happening to her, and of her eyes being permanently damaged, are the same as if he came to our house, picked her up, drove her in his car to his house, had her play with his boys for an afternoon, and then drove her back to our house  ("and I'm a good driver and I have good (Jewish! I want to add, and yes, Bug is available for prom!) boys," he says).  And all this reminds me of is how every single time I'm sitting on the tarmac in an airplane that's about to take off, I'm running through my head "you survived the drive to the airport.  The riskiest part is over," but I still feel like I'm going to pass out or throw up or somehow drive my fingernails completely through the armrest because I HATE FLYING.  Nothing makes it any better.  When I'm in the car, I technically have control over my vehicle.  I can attempt to swerve.  When I am in an airplane, I have no control.  I am giving my child to you and your team and for those hours I have No.  Control.

The higher probability things are that we don't get it perfectly right.  We agree that we're going for an acceptable range for her eyes to be in, and not a direct, exact new position.  I get it.  There's a risk that her eyes won't line up (gross, right??), since each eye is being adjusted individually.  And on and on.  If I think too much about it, then I won't go through with it, and that's not what needs to happen right now.

I ask him again about the anesthesia part, and he recommends we bring along "the iPad" (as if everyone has one, DUH) because often you can get the kids distracted with a video and they don't even notice the nurses carrying them away.  Bug has this obnoxious Mama Sixth Sense that allows her to triangulate my position at any time, so I don't think that this will work, but it IS a great excuse to go get an iPad, right?

We rapid fire about what happens afterward, because I want to make sure I can prepare myself for the worst (while, of course, hoping for the least emotionally draining scenarios as possible).  They let the kids sleep off the anesthesia on their own, so while the surgery itself lasts about an hour, it could be multiple hours until we see her (can I have a mini coma, too?).  Once she wakes up, there could be hysterics the entire way home, and then some (or complete and utter anger, irritation and insomnia, if her past experience with sedation is any indication).  He explains that she could have her eyes closed for days.  Some kids, he says, eat their meals with their eyes closed until something (TV, I'm sure) is finally convincing enough to open them.  Or she could open them right away.  We won't know.  She probably won't be a happy camper (did someone says M&Ms for dinner??? I'm DOWN).  Since the bottom muscles in her eyes will be tightened, they will be uncomfortable.  We can give her Tylenol to take the edge off (Him: "we do put Novocain on the muscles, but it's usually timed so that it wears off right as you're going home." Me: "How convenient for you!").  Adults who have this type of surgery are instructed to ice their eyes, but kids don't always tolerate that.  The whites of her eyes could be any shade of red, from mild pink eye to Pantone 186 C (my interpretation, at least, and my worst-imagined scenario).  We should generally know the new positioning after the first week, and by the end of the first month should be locked in.

Basically it's going to be a total crap shoot.  I'm going to try and get a week's worth of Xanax for myself, and four gallons of pre-mixed gin and tonics for Matt.  And if this STILL wasn't enough detail for you, I've got a lot in reserve, and you can always email me questions about what I plan to wear that day, how much Starbucks I've calculated a human being able to tolerate in a 12-hour period, and if I plan on impulsively purchasing an iPad the day prior.

P.S. No, I still do not know what I plan on telling her the morning of the surgery, what her "reward" will be afterward (even though she won't totally understand what the hell is going on anyway), and, perhaps most importantly, how we're all going to survive not letting her eat the morning of.