Monday, January 25, 2010

Back in 2 and 2

The week after Virginia, Sandi went back to school. She now wakes up every morning to work a full-time job, then attends class Monday – Wednesday evenings until about 10:30, and on Saturdays from 8:30 a.m. until 5:30 p.m. She really likes it and is doing awesome so far (no surprise to anyone who knows her) and for my part, I watch the kids. So since Virginia, our lives have been work/school/sleep or work/kids/sleep, depending on which one of us you ask. You'd also get a different answer to "which of you is more tired?" depending on which one of us you asked (hint: it's me).
I also believe that we seriously underestimated the emotional drain Virginia would be on us all. A few days after the last post, exhaustion set in and we finally understood that we'd been running on adrenaline for a long time. So I apologize for the lack of posts lately. But every time I sat down to try to write, I had to step away to stop a fight, make dinner, help with homework (by the way, when the fuck did first graders get to the point of doing 1 – 3 hours of homework a night?) ... you know, all the stuff parents do. Oh, and to every single single mother who ever lived, RESPECT! Dudes, I'm part-time at this and I'm turning into that creepy, insane looking guy from the Aqualung album cover.
When I finally did get a few minutes to sit down and write, everything that came out just seemed trivial and verbose. How do you follow something as weighty as surgery unless it's with another surgery or a report on results? Anything I could think to offer would have been like following Haiti earthquake coverage with recipes. Suddenly my day-to-day observations seemed ridiculously quaint and totally uninteresting -- even to me. So rather than bore you all, I think I'll call it a mini-sabbatical -- just until we adjust to the new schedule or something interesting and relevant happens.
To that end, our new surgery is scheduled for March 4. We'll need to get a new CT scan by the end of February and send it to Dr. Brad so he can confirm that Ethan's infection is gone and we're declared "go" for surgery fun. Keeping our fingers crossed.
Speaking of crossed fingers, those who sent out the vibes for little Jalia last time? do me a favor and take March 4 off. Turns out she had an ear infection, too, and Dr. Brad was unable to complete her surgery. I'm starting to think it's you all. Maybe you don't have this "well wishes" thing down quite yet. Don't take it personally, lots of people confuse the word "well" with "infection." Here's a little test for you: tonight before bed, tell someone "sleep well" and if they wake up with an infection, you should definitely stop using the word all together. Either that or start charging for your regards much as a hitman would. I personally know quite a few people I'd like to see "well." But that's neither here nor there.
So I'll leave you with a song that Thomas learned in Y-Care and was kind enough to sing to me on the way home the other night:
Tarzan the monkey man
Swinging from a rubber band
'Snap' goes the rubber band
and Tarzan breaks his balls.
Think I'm starting to see why kids his age are being given so much freakin' homework.

"There is no harm in patience and no profit in lamentation." -- Abu Bakr

Monday, January 11, 2010

Death, Taxes and the Resiliency of Kids

Ethan awoke from his anesthesia Thursday morning at about 11:30. He had actually been out of surgery for quite a while, but because they were anticipating a much longer procedure, they totally dosed him for the long haul. And I mean DOSED him. Like Jack-Nicholson-post-lobotomy-in-Cuckoo's-Nest-looking dosed. In fact, with the dressing clumped on his ear and wrapped around his forehead, pushing his brow down, he looked like a cross between R. P. McMurphy and this thing from Star Wars. A lesser parent would have pointed and made fun of him. In fact, a lesser parent did. And I got some great photos of it, too. Daddy: 1, Future Career in Politics: 0.
Looking at that ragged little lump of pathos that was, just a few hours prior, a vibrant, rammy, Tasmanian devil of a child, I felt pretty sure he wouldn't be back to normal for a good couple of days. The nurses warned as much, saying that appetite and lucidity return when they damn well choose. Meanwhile there'd be the pain and the constant whining and the remind me why we had a second ones. To my (circle one: chagrin/surprise/dismay/amazement), zombie Ethan lasted only a few minutes. Not more than an hour after we were discharged he wanted to go into the pool. He wanted a cheeseburger. He wanted to go to Disneyland. Yeah, wrong trip, little man.
Absolved of the Friday follow-up appointment, we hit the road, aiming to beat a snowstorm that was expected to start that evening. Our fool-proof Magellan GPS mapped a route home that oddly was more than an hour longer than the trip down had taken. But who were we to question the satellite gods? And so we made our way toward Richmond (? Ha ha, Magellan. Very fucking funny. I hate you.). Not long out of the blocks Ethan made his first legitimate request: a milkshake. Not quite solid, not quite liquid, semi-comfort food. I love it. Let's go. We stopped at Dairy Queen for a milkshake and hit the road again. 15 minutes later we heard the rattle of a straw sucking vaguely creamy air, followed by Ethan's demand of another milkshake. 4 hours and 5 milkshakes later we pulled into a darkened office complex to pee in the parking lot. (These are the memories that time won't erase, kids.) There were a few nervous seconds when it appeared as though the asphalt pitching back toward E's feet might provide a nice comic distraction, but at the last second the flowing pee veered right and a crisis was averted. We pulled into our driveway around 11 p.m. and poured ourselves into bed, Sandi having wisely dressed the kids in their pajamas before we left. She's good.
Some time Friday afternoon we realized that Ethan had never complained of any pain at all. I stood looking at the bloody, puss-filled, mid-surgery ear canal photos Dr. Brad gave us, then looked at Ethan. Sir, you had a gigantic hole in the side of your head yesterday. Are you telling me you don't feel any pain at all? Apparently not.
Another 'apparently': Consuming 5 milkshakes in a single ride does not mean that you won't eat 4 waffles, a peanut butter and jelly sandwich, chicken nuggets and almost an entire bag of cheese popcorn the next day. Oh, Ethan's back all righty.
We spent most of our weekend in our pajamas, easing ourselves back into life. Glad to be home, but constantly reminded by Ethan's bandages and the graphic photos where we'd just been. And some time over this past weekend it occurred to me, the reason I'm not disappointed in the way things turned out. From the very first time I spoke with Dr. Brad, he's been careful to qualify the situation with this caveat: "I won't know for sure until I'm in there." And so we braced ourselves for what might be or go wrong. Now he's been "in there." Now he knows. Now we know. It's going to work. As sure as I'm sitting here, it's going to work. And I'll happily go through a million "almost there" visits to see it through.


A note to parents of kids with atresia who aren't yet where we are in the process: I have to say here that I can not endorse the University of Virginia Health System strongly enough. We were amazed at and humbled by the professionalism and passion of not only Dr. Brad and his assistants, Dr. O'Rourke and Dr. Chance, but of the nurses, the anesthesiologists -- just everyone involved. These people are in it for your child, not just a paycheck (although I sincerely hope they each make more money than they'll ever be able to spend). Nobody is that freakin' focused or energized at 6 a.m. unless they truly love what they do.
The thing that struck me most was the total absence of ego. Ethan was never less than the star of the day, the center of everyone's attention. The fact that when he learned of the infection, Dr. Brad chose to call his mentor, Dr. Jahrsdoerfer, to consult, just speaks volumes to me about the caliber of people we're talking about here. Maybe it's TV's influence on my perception of how a world-renowned surgeon would act, but I was comforted by the fact that he didn't go rogue and try to muscle through the procedure because, dammit, he's the best and that's what the best do. No, he put our son's well-being before his ego and took the prudent course of action. And we are grateful to him and his entire team for their focus. Actually, grateful isn't even close to strong enough, but I don't think the word I'm looking for exists in our language.
All this isn't to say that the surgical team weren't as frustrated as hell. They were. Sandi, who met with Dr. Brad while Thomas and I were amping up with coffee and chocolate milk, told me that while he didn't come out and say it, she could tell he was disappointed. Good. I mean not good like "good, I'm glad you're frustrated," but good like "good, I appreciate that you're a results junky." The world needs more results junkies. Yes, I'm looking at you pre-anesthesia registration desk lady who left us hanging for two hours. Hope your dinner was delicious.


Another shout out goes to the Marriott Courtyard in Charlottesville. They not only discounted our nightly rate because of Ethan's surgery, but they didn't charge us for the second night of our commitment since we left that evening. I don't even need a TV reference to tell you why this came as such a surprise. OK, so your restaurant ran out of food. There are only a billion restaurants within walking distance. And so your coffee sucked. See "billion restaurants" note, replace "restaurants" with "coffee houses." And so it felt like you had the air conditioning on in the pool. You had a hot tub. Plus you let us park for free, you gave our kids free cookies and it was an easy walk to the hospital from you. Cheap, convenient, friendly. We'll be back and we'll tell our friends about you.


On another note, mojo hoarders, please send more good vibes down Charlottesville way for a little girl named Jalia and her family. Jalia is scheduled for surgery this week with Dr. Brad and friends to correct a failed attempt at atresia repair (performed by a different surgeon). I've never met the family, but I've seen pictures of Jalia and she is breathtakingly beautiful -- the kind of little girl you just want to hug and make giggle. Or have your younger son marry one day. Anyway, best to Jalia and family. We're thinking of you all, hoping for the best, knowing you're in good hands.

"You need a minute? Take your time. You need an hour, baby, you can borrow mine. I got all the time in the world." -- The Subdudes

Thursday, January 7, 2010

Comma Chameleon

Ethan has an ear infection in his "little ear." Because you need an eardrum to sense an ear infection and Ethan has no ear drum, we had no way of knowing. Nobody had any way of knowing until Dr. Brad made his incision. In fact, had it not been for this surgery today, Dr. Brad suggests that the infection would ultimately have either gone away on its own (although he did feel compelled to label it a "massive" infection, and come on, have you met me? have you seen what passes for luck in my life?) or spread to the other ear where Ethan is equipped to sense it. Of course at that point we'd be up to our ears in fever, tears and heartache ... cats and dogs living together ... Just plain carnage.
So the good news is that we discovered an infection that could have really laid E low. The bad news is that the infection was so massive that Dr. Brad couldn't finish the surgery, which in itself actually contains some very good news. First, we now know the condition of Ethan's ear bones. The incus and malleus had to go and Dr. Brad removed them today. The stapes was apparently salvageable and when we return in a few months, Dr. Brad will use it, completing the chain with prosthetic ear bones. The other good news is that the facial nerve is nowhere near being in jeopardy. So Ethan now has a hole -- the rough framework for the ear canal. We will have to come back once the infection has gone away (he's already had his first dose of antibiotics) when Dr. Brad will re-open, place the prosthetic bones in place, create the ear drum using cartilage from behind the ear, and line the new ear canal with a skin graft from the upper arm.
If I were on the outside looking in I would expect that I'd be sad or deflated. I wish I could explain why, but I'm not. In fact, I was so giddy to learn that Ethan was OK that I couldn't really think of anything else.
So Ethan was released from the hospital, groggy and even cuter than when we dropped him off. We had intended to stay until tomorrow, but the prospect of sleeping in our own beds -- of sleeping at all -- is really attractive right now. Plus this area is expecting a snowstorm tonight and driving in snow is even less attractive than not sleeping through another night.
I promised Thomas one more trip to the pool so we're heading down there now. After that we'll hit the open road, stopping off at Sheetz for a few dozen Starbuck's double shots.
To all who once again offered your mojo, thank you. Hope you have a little in reserve since it looks like we'll need it again in a few weeks or however long it takes to get rescheduled.
So let me end this post not with a period, as in "end of the statement," but with a comma, as in "to be continued."

"It ain't easy being green." -- Kermit the Frog

Wednesday, January 6, 2010

As Of Thursday, 7 a.m.

I'm literally working on 15 non-contiguous minutes of sleep since 5:30 yesterday morning, so I'm just gonna bullet point and pray that this makes sense. Aiming for the screen in the middle, as it were. I promise photos and videos when we get back home and have had a chance to rest. Meanwhile ...

- Woke to snow covered ground and temps in the low twenties Wednesday morning. Oh, sweet, creamy Jesus, nothing says "road trip" like ice-slicked roads and the world's worst drivers. (Seriously, Delaware? That whole tax-free shopping thing? Well, I for one would gladly pay a few percent in sales tax if you promise to use the money to teach your citizens how to drive, m'kay?)
- Trip was fairly uneventful save for some slight weirdness in the men's room at Denny's (pee break number 3) where some guy was asleep and snoring in the stall.
- Speaking of snoring, it finally occurred to me what Sandi's snoring reminds me of: an 18-wheeler gently swerving onto the rumble strips. If you slowed it down it would sound like "nyugugugugugug." She even glances off the guard rail with a "brupfffshissssssshhhhhhhh." Her highway sounds and the ebb and flo of my CPAP last night made an odd rhythm section that would have been at home in a yet unwritten Tom Waits "trucking up the coast" song. Diamond on My Windshield. Truckers in the Sand. Whatever. Did I mention I haven't slept in days?
- Also passed a store owned by 2 brothers (can't remember the name) on Rt. 29 that offered guns, gun cleaning, a gun range, gun safes, gun accessories, ammo (both factory and reloads), targets, fireworks and cold soda. Couldn't help wonder what it was like living next to those brothers as kids. Mom, have you seen the dog? Not another one!
- The kids watched 2 whole movies on the way down and still had time to pretend to play Go Fish without cards (Thomas: "Got any penguins?" Ethan: "No." Thomas: "Ethan, you're supposed to say 'yes.'" Ethan: "Yes." Thomas: "DAMMIT!" It occurs to me that I never understood that game.)
- We made it to Charlottesville about an hour ahead of time. What a beautiful town! Of course most of the UVA kids look like they're trying to get back at their rich parents. Look At This Fucking Hipster would die and think they'd gone to heaven. Whatever. I come from the generation that brought you the Achy Breaky hair, so I am in no place to point a glamorous finger. Still, I can't help but thinking of Clarice Starling, wondering in which buildings she had classes.
- Ethan had his hearing test, then we met the man. Dr. Brad is everything we'd hoped for and more. You can see the smart wafting off him like hot on a desert highway. Ethan liked him instantly. Dr. Brad explained what would happen during surgery: he'll make the incision, drill through to the middle ear creating the canal, fashion an ear drum from some cartilage behind the ear, then take a skin graft from the upper arm to line the newly formed canal. He says that often the only post-op pain kids experience is from the skin graft. After everything's in place, he'll pack the ear and send Ethan to recovery.
- We decided that Thomas' voice should be the first voice Ethan hears with his new ear. Thomas is practicing.
- After our consultation we had to go to the pre-surgery area. When we arrived we were handed a 4-page questionnaire to fill out. Had to wait 2 hours just to hand that paperwork to some woman who sounded just like Paula Dean, y'all. 2 hours. In a waiting room. With 2 young boys who have been awake and moving since 5:30 that morning. And all the TVs had Glenn Beck on. God help me.
- I promised to take the kids to the pool, so when we got back to the hotel we got changed and took a dip. I opted for the hot tub. I may opt for it again tonight if the cosmos align. Just me and Thomas since Sandi's staying with Eth tonight.
- The restaurant at the hotel apologized for having no food. We ordered out. Ate dinner at about 8, which could explain why none of us slept well.
- This morning's free coffee was worth every penny.
- Up at 4:30 this morning to check Ethan in at 6.
- Ethan was observably freaked out this morning. He wanted to get changed back into his clothes and leave. He wouldn't take the liquid they offered to "take the edge off" and make anesthetizing that much easier. So Sandi had to get dressed in scrubs and go with him into the OR where they pumped chocolate-scented anesthesia through a mask. Sandi was pretty upset when she came back. That was the last time either of us will see him until his surgery is complete.
- We grabbed a little breakfast and have since set up shop in the waiting area (think People of Walmart, only fatter). Bill O'Reilly is on. Jesus, am I glad I didn't wear my Democracy Now! t-shirt or bring the book I'm reading: The God Delusion by Richard Dawkins. Saw quite a few rebel flags on the way here. Yeah, no.
- Thomas and I walked back to the hotel for pooping privacy and a little Imagination Movers. Ethan should be out of surgery between 11:30 and 12:30. Dr. Brad will send update messages to us throughout the morning, and assures us that he'll have a really clear idea of what kind of result we can expect when the surgery's over. Honestly, I've never worried less about another human being's competency in my life. I am a little sad that I didn't get to meet Ronnie Bean on this trip, but we've left messages with co-workers.
Ronnie: If you still read this, thanks so much for everything. So sorry we missed you. Maybe next week on our follow-up visit?

So now it's back to the hospital to oversee Thomas' homework and dream of warmer, hearinger days. But before I go I want to thank ALL of you who have sent your messages of support and good wishes. I'm not kidding when I say that we can feel the vibes, so please keep them coming. Love to you all.

"Daddy, I got you something from the store. *fart* Hee hee." -- Ethan

Sunday, January 3, 2010

Doin' The Ear Canal Dance, Baby!

My brain is on fire. The holidays have officially passed, the decorations have been put away and, ironically, my heart is racing more at the excitement of the coming days than for any recent holiday memory. (And believe me, we've had some pretty damn good times over the past few weeks.) Tomorrow and Tuesday are all that stand between us and Virginia and our appointment with destiny ... er, Dr. Brad ... and I now find myself fighting with my mind, begging it to focus on even the simplest task.
The day is close. Close enough to pack today and not be thought a jackass. Close enough to work into casual conversation (Oh, I'd LOVE to but I'm afraid I'll be in Charlottesville for a few days while Ethan undergoes surgery. What? Oh, no, nothing serious. He'll only be able to HEAR NORMALLY FOR THE FIRST TIME IN HIS LIFE!) Close enough to monopolize my every waking minute. Close.
I confess I haven't been able to get too excited about the holidays for a lot of years. Some of that is probably due to me steeling myself in order to make the days pass more bearably. I mean, when you're anxious all the time, time is not your friend. It passes way too leisurely, almost audibly taunting you with its nya-nya nya-nya nyaaaa nyaaaaaaaa and daring you to kiss its slow-moving ass. So I've been intentionally taking the time to drink in the week and a half I've been home with the kids: Trips to the aquarium, train rides, museums, indoor playgrounds ... . And then there were the holidays themselves. So much life packed into such a short time. And through these days I've often caught myself just staring at them, not wanting a minute to pass where I wasn't sensing them in some way. Trying to catch them in the act of growing before my very eyes.
It's been such a treat, too. Our ordinary routine gives us about 2 hours per evening to do homework, cook and eat dinner, take showers and do our reading. That's pretty god damned pathetic, I think. And I'll be sadder than I'll know how to handle when we're forced to reinsert ourselves into that rut, eventually saved, albeit temporarily, by summer's easier pace.

During one of the jam-packed days of adventure that have been our last week and a half, we decided to add to Ethan's already considerable Christmas take. But this purchase wasn't purely pleasure and/or appeasement. Many of the parents of microtic kids we've talked to have strongly suggested that we score an Under Armour skull cap to hold the post-op ear dressing firmly in place. And so one cold day last week, amidst an itinerary that included a trip to the Train Museum and quite a few frames of bowling among other activities, we stopped by the nearby Under Armour Outlet store. Ethan picked out not only a bright red skull cap, but a matching bright red headband ... uh, for accessory's sake I guess. And because nobody wants to be the only kid in the group with a skull cap, no matter how badass it makes you look, I picked up a black one for me. You know, as a show of solidarity. Yeah, like those parents who run marathons in honor of their child's birth defect. Totally noble and totally not because it gives me an excuse to look totally badass or anything. Did I mention these things make you look totally badass?
Anyway, we're taking one long, last look at Ethan's virgin ear. We're savoring it, burning its image into our minds so that we'll never forget what this time has been like. May our lives after this week be as drenched with love as our lives before have been.
Ethan, we love you more than our own lives. Whatever happens, know that.

"A long December and there's reason to believe maybe this year will be better than the last. I can't remember all the times I tried to tell myself to hold on to these moments as they pass." -- Adam Duritz