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.

taking a weekend off - and plunging into the week

Well, we had a true shabbat this past week, as the Eldest's nose really did take a day of rest. Heck, it took three days of rest. I was just starting to think we might be done with this nosebleed business, when I took the kid on a playdate. Naturally, he got whacked (by a foam bat) in the face. Naturally, the nose started bleeding again.

phooey. (Hey, joy - this is a moment for your internal toddler. Cue?)

On Monday, I called and sounded serious and worried at the newly returned hemophilia nurse practitioner. The NP agreed with my concern, and emailed her counterpart over at ORL (ear, nose and throat). The counterpart emailed everyone in ORL and within moments, two doctors had offered an emergency consult for 8 am this morning. Bring Amicar (secondary clotting medicine), they said. Have his factor levels high - we may just fix this in the office.

But no. We talked and debated (stop this cycle with mild methods? try and stop future cycles with aggressive methods)? and came to grips with the ORL team's absolute refusal to do the cautery in the office. No, they'll do it in the surgical suite, under general anasthesia. Sigh.

The Man looked at me. I'm just as happy not to do this, he said. A veteran of near-daily nosebleeds, I disagreed. If we can save him future such experiences, I said, I think we should. For all that it's in the OR, this is a truly minor procedure. I vote we do it. The ORL guy watched us, and waited. Finally, I just don't have the experience that you do on this subject, the Man told me and he turned to the ORL doc. Let's do it, he told the doc, and lo! wheels were set in motion.

I'm persuaded that the ORL nurse practitioner has a real future as a successful dogsbody in some military camp. Over the next hour or so, I watched her wheedle, persuade and generally sidestep anyone who should give her what she wanted, but wasn't inclined to do so immediately. We escaped briefly to take the Eldest to camp, before she called us back: the pre-op team wanted a pre-operative consult. We were in for tomorrow morning.

To gilg our lily, the Eldest managed to produce a couple of nosebleeds in the three hours it took to do the pre-op merrygoround. Bless magid, who turned up to supervise small hungry children - on zero notice! - and brought food with her. I could think of no better thank you than to feed her in return. It was a feast tonight, and now - sated - we rest. I'll pack a bag with things so fun that they are irresistably distracting to a child forbidden to eat - and tomorrow we go to the hospital to talk to the nice man with the white-hot poker (to paraphrase a nearly-funny comment).

Admittedly, I've been a little worried about the Eldest's state of mental being, but I've finally decided that the current irritability and tiredness is more physical (anemia) than psychological. True, the two feed on each other, but if we fix one, we give the other a chance to heal. I was still trying to persuade myself when I came across this image tonight, and I'm easing back on the concerned mama role. Here is the Eldest's self-portrait from the last time we spent the day in the hospital. Note the IV he's drawn on one arm, and the grin on the face.

Oh, yes. We should be just fine. But I reserve the right to worry - just a wee bit - until I see him, pokered up and sleepy.
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The Night Before Pasta, or basil-artichoke pesto pasta
1 big bunch of basil, well washed and dried
4 cloves of garlic
1/3rd-1/2 cups olive oil
1/2 tsp salt
2 cans artichoke, drained
1/3rd cup sunflower seeds (or nuts!)
optional: lemon zest

Whirl garlic and zest (if using) in food processor. Add remaining ingredients, and whirl until well blended. Mix gently with freshly cooked pasta, and see if you can persuade your children to pick nasturtium flowers to set prettily on top. Mine needed little encouragement - it was rather more challenging to get them not to denude the plant entirely. (The Toddles is a touch unclear on what's an herb and what's a plain leaf)

Note: this makes a wonderfully creamy pesto, and I had some leftover for tomorrow! It'll make a great dip. But, try and balance your meal with something really light and clean, like mango-tomato salsa or a pineapple salsa.

of gaps and grins

(wherein, if writer's hurdle extends to the blog, I shall roar)

On Friday, the Eldest changed tactics, and offered a different ENT challenge.

He's been wiggling this tooth for a while now, and we happily celebrated with him when it fell out. The added bonus of his timing (I was en route to a mammogram and was very willing to be distracted), plus the careful pleasure with which he tucked it into a pretty wooden box. The Eldest plans to keep all of his baby teeth in this box, and has chosen a safely high spot on a shelf for it. We're not a tooth fairy family, he informed me. Honestly, I didn't think we were.

Later that evening, he asked me why I was so excited about the tooth. I had to sit down to explain this one, but it came pretty easily. I know that you are getting bigger and can do more things, I said - Like five hundred and FIFTY piece puzzles! he interrupted - Yes, like those. And I know that as you grow, you move farther from being a baby towards being a small kid, then a bigger one, then a teenager, and eventually a grownup. The Eldest nodded seriously. But sometimes your body does something that reminds me that you have taken steps down that road, like this. Your baby teeth fell out, and an adult tooth will come. The Eldest offered me his newly gapping grin. It's like a reminder: you are getting bigger! And that's exciting to us.

The Eldest looked at me gently. Well, of course it's exciting, he said soothingly. And then he stuck his tongue in the gap and wiggled it.

There's a jelly-like clot sitting in that gap, but happily it's not oozing. Just sitting there. And thanks to the Eldest's latest round of nosebleeds, he's packed to the gills with ENT-friendly clotting power. The tooth has distracted him handily from the nosebleeds, although he's been showing a little bit of emotional strain - a little faster to flare, to snap and growl. Well, fair enough. Me, too.

But, since the first talk had gone so well, I thought I'd try another. After shabbat dinner, while the Man took the Toddles up to bed, the Eldest and I had a futon moment. So, I said, what d'you think about these bleeds? The Eldest stuck his tongue in his toothless spot and considered. What bleeds? I rolled my eyes at him. The nosebleeds!

Oh. Those.

We talked it through: the nosebleeds got factor, which should make a clot, right? But they also get Amicar, does he understand why? He does. So, why aren't they better? The Eldest thought this over. I don't know, he said, furrowing his brow. Why not?

Well, love, when you got that bleed in your calf, we gave you factor and ice. And we made you rest the leg, d'you remember? The Eldest nodded, remembering. We rest the leg because the healing is fragile, and takes a little time to get stronger, so that you can use the leg again safely. But can you rest a nose? The Eldest looked surprised. No, he exclaimed. You can't! I grinned at him. Nope. Can't put a nose up on a pillow, can't stop using it, can't really rest it. I mimed popping a nose off and putting it on a cushion. Ah, well, I said, shaking my head sadly. Guess that won't do.

The Eldest went off to brush his teeth, limp with laughter. You can't put it on a pillow, he told the Man, and burst into giggles. The Man, an old hand at recognizing my handiwork, patted the giggling child and steered him towards bed.

So. The old anticlimax holds steady, then, eh? Drama, resolution, laughter and off to the next patch of road. What's next? The Toddles had a suggestion:

I have a wiggily toof, too! shouted the Toddles, bouncing up to be admired. Oh, says the Eldest solemnly. Really? Let me see. One examination later, the Eldest looked up at me. Don't worry, Mum, he said, that tooth's got a ways to go. Ah.