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


7 comments:

  1. I wanna a milkshake, and I'm gonna need to hug Ethan and Jalia. (really tho, I'm BEAMING, just BEAMING!!!) yay!

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  2. Hey Ed,

    Glad to hear Ethan has bounced back so quickly. Dr Kesser sounds great.

    Simone

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  3. Hey Ed,
    Thanks for the well-wishes. Jalia ended up almost in the same boat as Ethan. He removed her canal and ear drum and found her middle ear infected and filled with fluid. He closed up her canal. We are not sure we will go back and continue, but we are home already and Jalia is doing. We are almost back to where we started and how she was born. Dr. Brad is as great as you said!

    Jill

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  4. Oops..meant to say Jalia is doing great.

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  5. Jill, Sorry the trip wasn't as fruitful as you'd hoped, but we're really happy Jalia is doing so well. This infection thing really sucks, but Ethan just finished his course of antibiotics and we're back on the schedule for 3/4 -- after another CT scan to make sure the infection is gone, of course. So far we haven't had to reschedule our California trip.
    Please let us know what you decide and keep us updated. And welcome home. I know how exhausted you must feel.

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  6. I'm SO glad to learn that things are going well. Kids are truly amazing. And Ethan's parents aren't so bad themselves. You're doing great, guys!

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  7. March 4th. The only date that is also a command. March Forth....and HEAR!! :o)

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