Wednesday, July 20, 2011

Waiting Room

Cholesteotoma

It's always a bad sign when the doctor says the procedure should only take an hour or so and three hours pass and you're still in the waiting room, beneath the large clock, a magazine rack full of old magazines and the drip coffee pot with acid coffee and artificial whitener.

I brought a clipboard with all the necessary papers and a stack of sheets of bond paper, thinking I would probably be here longer than we had hoped for.

Doodles of projects that I've not yet started emerge. Two print exchanges I've signed up for but not really thought about and some recurring images that have been coming back again and again.

But the longer I waited the more medical became the drawings until finally I just drew what we were really worried about. This is a highly rough schematic of the middle and inner ear as imagined if seen in a frontal slice through the skull. I've drawn/imagined a clean middle ear with the three little bones, the incus, malleus and stapes all in place against the snail-like, spiral cochlea and mastoid. I've studied anatomy but this is fancifully imagined and would make my old anatomy teachers cringe with dismay. But I'm engaging in guided imagery, positively thinking about good outcomes with the naive hope of a parent, whose child is again under general anesthesia, trusting us to have made the right decision and that everything will be all right.

A. is having his fourth operation on his middle ear to see if the benign tumor he was born with has come back, or if his recurring hearing issues and infections are just scarring and fluid. The Surgeon and Operating Room had scheduled him for just an hour, which means the doctor actually expects it to be quick and easy, probably just fluid and a reconstruction of his ear bones...but the delay suggests otherwise. Cholesteotoma is an benign, but erosive and very slow growing tumor of the middle ear and is noted for being recurrent. A. has had several infections in the last 2 years, and a recent polyp was a telltale warning that things were again amiss.

When the surgeon finally emerges to bring us news, it is not the end of the world, but not what we had hoped.

The growth had come back, they had to take out what was left of his middle ear bones to clean out what had wrapped around them and couldn't be dissected away. They'll have to go back in again in 6-9 months; at that time they should be able to see if they truly have gotten it all out and replace the missing bones with a titanium implant so he can hear again out of that ear. We were led into the recovery room where A. was already awake, a large dressing on one ear, looking like a dog who had just had one of his ears cropped.
But awake, not crying, asking again and again (the sedatives had temporarily knocked out his short-term memory) what they had found. In the lull between his frequent awakenings and resting, and before we took him home, I added to the drawing the small black growth around the little bones that aren't there anymore.

4 comments:

  1. Andrew, my very best wishes to A. and the family.....

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  2. Thanks, Diana;
    Things are better this morning. He was up at 8 and has been playing "World of Warcraft" on the computer since then. He is less grumpy now that we took off the huge dressing.
    He is happy that he doesn't have to take a shower for a week! and he's starting to roll his eyes at us again as only a teenager can so I know things will be all right.

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  3. How you could have the clarity of mind to think to bring paper and then to be able to draw....After that first hour I would have been in a hysterical panic. The second hour I would have been in the chapel. Third hour I would have gone for the chocolate non-stop.
    But thinking of the big ear dressing made me think of drawing a Van Gogh style portrait!

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  4. I'm a western-trained physician so I have a pretty good idea of what can go wrong, and what would be really unlikely.
    The fears I walked around with were different;
    "would they damage the facial nerve and have him have a disfiguring facial paralysis for the rest of his life...will he get a staph infection...will this mean a life of repeated surgeries....?
    The actual outcome was what we were actually concerned about...
    Also, the waiting room was full of other children and parents waiting to go into surgery and they sadly were much worse off. Our surgeon specializes in microtia/atresia (absent or malformed ear) surgeries and there were children there looking forward to 6-8 hrs of surgery for repairs, reconstruction, attempts at allowing them to look normal/hear again.

    We were worried about "when can he Fly", or "when can he swim?".....shallow, trivial things that in the big picture, and compared to the others' trials, seem almost shameful.

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