Thursday, August 07, 2008

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.
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.


Auntie A said...

No, please, not the interrogation! Unless it comes with food of course (and somehow I suspect it will...)

Julia said...

Welcome back to normal. Glad he had a good day, though.

Anonymous said...

What a trooper! Man, if only us adults would be as malleable. Hugs, Mama

Anonymous said...

90-minute half life... Oh my...had to re-read that.

mama o' the matrices said...

Lois - my bad, wasn't quite clear. The FIRST half-life was 90 minutes. This is, by the way, a huge improvement over the years where his first half-life was 30 minutes. Assuming the test results from yesterday are truly accurate, which they won't be (the situation skews the results).

But after the first, breathless half-life comes slower ones. The dose does last (or has lasted) 48 hours, so the last half-lives must be much, much slower than 90 minutes.

Heather J. said...

Isn't it crazy how quickly kids can adapt? My kiddo (6 yr old son) has an endoscopy done every other month. He doesn't mind the hospital, and he LIKES the anesthesia mask, but he's picky about where his IV goes. He HATES when they have to take the IV out, but the procedure itself? No problem. And when after he's awake and had his juice, he usually wants to go to school for the rest of the day! Crazy!

Rachel said...

I am so happy it all went well. We are thinking of you all, and especially the Eldest. After you and Toddles left on Wednesday D had many questions about his nose!

By the way, I have some eggplant if you didn't get any this week.

Shabbat Shalom (almost).

Rixblix said...

So, the best vein for infusing is/was up the kid's nose? Dang. That stinks! We've got funky initial half lives over here, too. For us, it's the nature of the product we use.

Anonymous said...

Thanks. I'm breathing a bit better now... Was in fear of you busting out of your lifetime max...

mama o' the matrices said...

Lois, if we had a lifetime max, I'd have the Man hunting for a different job. The Eldest had blown past the 500k mark by the time he was a toddler! A 1 mil cap is a sad joke to us, really. As you'd know.

Rix, I KNOW. The best frigging vein in the house, and we had to seal that sucker up. Of course, can you imagine trying to get that vein? With what, a 27 g needle? Ha! In a real pinch, I plan to seriously irritate the kid, and then use the vertical vein he's got on his forehead. Like father, like son - both of them have that vein bulging when they're mad...

Rachel, *hug* Woulda called you if I needed you, but I walked out of the library that day feeling so embraced by helps.

mama o' the matrices said...


it's astonishing, isn't it? Kids are amazingly resilient - it's both their strength and their weakness, I think sometimes. They adapt and adapt and adapt until, pop! they break. But if you keep the challenges as manageable chunks, they'll do just fine.

Love that he wants to go to school after. Of course he does.