welcoming (back) normalcy

I'm so tired that the world is blurring in front of my eyes. But we're home.

Everybody overreacted in creating today - almost. The ORL (ear, nose and throat) people could have done this procedure in the office, and without general anasthesia. Almost. The pre-op people could have avoided hauling us in for hours, just in case we needed a bed. Almost. The hematologists could have followed standard procedure on this. Almost.

But let's start with the Eldest. I spent an absurd amount of time choosing his clothes last night, looking for the outfit that would say 'take extra good care of me, I'm a wonderful kid.' Are you surprised that I couldn't find that outfit? I settled on a t-shirt from Mary Jr and the Toddles' favorite kipa. On the way to the hospital, we listened to a CD from the Nome and told stories about when Saba and Savta had their noses cauterized, and generally did our best to surround the child with signs of love and family. Over and over, I missed the bright mischief of the Toddles, happily spending a standard Thursday with Mary Jr's predecessor. But the Eldest bloomed under our focussed attention. Deep in a game of Cover Your Tracks (thanks to his grandma and grandpa), he was laughing and groaning and just plain happy.

Truly, the child had a splendid day. Yes, he spent it in the hospital, preparing for - and then recovering from - a procedure and anasthesia, but he was praised, petted and juggled for (yay for the Big Apple circus clowns, who stopped into the pre-op unit!), and told many very very bad jokes. By me, of course. He showed the anasthesiologist where to put his IV, and tried to persuade her to let him keep an IV kit. To practice at home, he explained. He pushed his own meds through the line, and quizzed the clowns on their magic tricks. And then he fell asleep.

The Eldest woke up from anasthesia smelling funky, with bad breath and sweaty hair sticking straight up - except where it was glued to his ear. He then proceeded to down two gigantic apple juices, watch a ball game and ask if he could keep his hospital jammies. He did.


On his way out of the post-anasthesia unit, the Eldest stopped. Excuse me, he said to the nurse, but do you think we could do the other side now? She looked puzzled. You are done, honey, she told him. You can go home now! You did a great job. But the Eldest was determined. Please, he said, couldn't we do the other side of the nose today? I'm having so much fun, and I don't want to go home!

We all grinned at the kid with his too-big yellow hospital socks (my flippers!), wearing his slicker over his johnny and hospital pants. Talk about adaptation, people. Talk about finding the joys in the situation, and holding on. Go, Eldest, go.

But first, go home. Where, by the way, the Eldest recruited the Toddles, and the two of them anesthetized and then cauterized the nasal passages of all available adults. Including Auntie A, who stopped by for a visit. Over shabbat, I shall put her and magid into the same room and interrogate them: are they taking shifts? Their timing is uncanny.

So, what's all the fuss about? Turns out that the Eldest had an exposed vein running the width and height of his nostril. That exposed vein (think an 'L' shape) split from top to bottom. The ORL doc applied some precise chemicals to the spot, and voila! with some luck, that will do the trick. I had initially resented having to dose the kid for an in-office procedure that failed to come off, and THEN spend the day having meetings so that we could come back the following day, and dose him again for the real deal. But.

Given the aggressive dosing and redosing, the Eldest ended up with well over 100% clotting medicine pushed into him at the time of the procedure. Which is good, because 1.5 hours later, he had well under half that. So, he had a half-life (used half of the drug available to him) in about 90 minutes. Not 6-8 hours: ninety minutes. This may explain some things, like why the bleeding failed to stop earlier in the cycle, when it was far less persistent and the tissues less damaged. And why increasing the factor was not as effective as it should have been.

In other words, Lois, you might almost be right. The Eldest lives in an immunological state of hyperactivity, as our allergists will (ruefully) tell us. He typically has had an unmeasurable level of antibodies to his clotting medication, which increase the speed at which his clotting levels drop. In January, we got the first normal test results that we'd had in years, and we celebrated. Don't read too much into one test result, my dad warned me tonight - and he's right. But the test result that we may have over-read is probably the one in January, the result that promised greater stability in managing the Eldest's bleeding.

Normalcy, a la Eldest, is more likely the rather hyperactive immunological response that has him burning through his clotting meds. Which is irritating but familiar - we know how that reality works, and it's not too bad. It's one more dose of clotting factor when he has a bleed, and a bit more aggression at the early hours of a bleed. I'll take it over true inhibitors (antibodies) any day. Still, we sat in the helpfully reserved bed for a while, as hematology grappled with this a bit.
So much for normal - welcome back, normal.
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P.S. I walked out of the ORL office yesterday with a deep appreciation for the varieties of human idiocy. The ORL folks have, for years, collected the odder items they've plucked out of throats, ears and noses. I was quietly glad to see that, once again, the Eldest has managed to acquire a doctor (or doctors) with a sense of the absurd. Nothing is impossible - just go see the display.