Wednesday, February 11, 2009

an Imperfect stimulus package

Note: the theme for this post can be found here

Um. Yes. But some weeks that's easier than others, hmmm? This week, my house is festooned with laundry. Laundry is not really compatible with enjoyment in my book, unless it's clean and en route to drawers. Right now, it's clean, dripping and doing nasty things to the wood trim on the stairs. Oh, and did I mention that it's everyfreakingwhere?

Tablecloths dangle down the stairs, towels are drying into something stiff and regrettable, socks are hanging from slightly open drawers, and the Eldest's undies are best left undiscussed. Still, this is all in service of a good cause: in the midst of a recession, the Man and I are making a sincere effort to support Mike the Service Man. This month, Mike has been a mechanic (I'm sorry, ma'am, but your car won't pass inspection), an oven repairman (you are smelling gas when you turn on your oven?), a washer/dryer repairman (oh, wow. your motor blower is completely burned out), and finally, a pair of rheumatologists. Clearly, we Imperfects are doing our best for the economy, by pumping astonishing amounts of cash into the hands of the nice folks who are trying to help us.

- thanks, guys -

Hooray for the Mike who replaced the tires on our car, especially the three with balding treads and cuts. The fourth was a bonus - just like the unbroken passenger side mirror. The spark plugs were rather more necessary, but I can't speak for the quetzl. Or the mrgfnlap. Driving in snow and slush has been rather easier since Mike set to work - must be the new mrgfnlap that did the trick.

Hooray for the Mike who replaced the igniter in our oven, and let the nasally functional Imperfects relax. And look! The oven can reach 350F in under 25 minutes now, thereby enabling QG's birthday muffins.

We're reserving judgement on the Mike who came out and oohed and clucked over our poor dryer. He's still ordering the part. Um. I'll get back to you, says Mike. Grkltfp, say I.

And oh, so nice to be done with the Mikes from the rheumatology department, who patted and flexed the Eldest this morning, trying to solve a mystery. The delights of these Mikes were rather mixed, alas, as was their success. But hey, it's all part of stimulating something. My temper, perhaps? My not so latent ability to worry? Whichever it was, mission accomplished.

I would, however, have preferred less mystery and less Mike. Ah, well.
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The story of the rheumatologists (hastily explaining here, before some local readers head over to beat my head in for amusing myself/being cryptic) is the story of a two year-long mystery.

Last autumn, the Eldest started school and promptly began to have a number of hand bleeds. Except that they didn't quite look like hand bleeds, because his hand would swell up oh so fast (poof! ten minutes, and there was Michelin man hand). There was no serious pain, no bruising* and the swelling would go down in a couple of hours. So, said the Man, was this a bleed?

We argued about it throughout the autumn (treat as if it is a bleed, said the hematologists - but-but-but insurance! irresponsible use of resources! spluttered the Man), and into the winter. At our annual visit to the hemophilia clinic, the hematologist frowned. No, he said. It doesn't sound like a bleed. The Man looked smug, and I sat up straight. Fine, then. So what is it? The hematologist shrugged. Not a bleed, he repeated. Maybe it's an allergy thing?

Five months later, the allergist listened carefully. Could be caused by allergy, he said, but given the circumstances, it sounds unlikely. But ask the NY team.

Three weeks ago, the New York hotshot allergist tilted her head to one side. Hmm, she said. You should treat it as if it is an allergic reaction, but out of curiosity - is there any angioedema in your family? I frowned, half-relieved that she was taking this seriously, and half-disliking her line of thought. No. No angioedema that we know of.

One batch of bloodwork later, we were on our way to this year's annual hemophilia clinic visit. The hematologist looked at the lab results, and repeated them, ordering a full panel of not my specialty tests. They came back, predictably, funky in entirely different ways. Not my specialty, sighed the hematologists. Not my specialty, pointed out the allergist. But treat it as if it were.

I went off to find my favorite head-banging spot, and indulged in some therapy. Ow. And sat down to think.

As far as I could tell, we had a number of challenges here. First, was perspective. It's tricky to turn off the medical mama eye, and to decide when you have a normal level of weird, and when you have a worry-worthy level of weird. And, once you realize that your kid is medically cracked, the naivete that might stop you from looking for more cracks vanishes. What else is lurking, asks the newly-realistic mama. What else is coming? It's a tense way to parent, waiting for the next diagnosis, even looking forward to the next diagnosis - after all, the diagnosis is the sigh of relief that follows a freakin scary unknown patch. Pessimism or realism? Medical microscope or reality? I tossed the Eldest into the car and drove while his hand ballooned. Oh, boy, said the pediatrician. That is odd. (perspective: check.)

Next, was information. If a hand swells, does that mean we could see a foot swell? A leg? A neck? Without an understanding of the process and it's implications, we couldn't judge this. Nor could we direct ourselves to the appropriate specialist, while our own dithered. (information: blank)

I'll admit that a third challenge was sheer irritation. I dislike being shuffled from pillar to post. I especially dislike people not taking responsibility. And I distinctly dislike not having a plan in place to respond, should that swelling do something exciting like push the Eldest's airways closed. Yeh, definitely not so much liking that one. And, I admitted to myself that, post-pre-school imbroglio, I was also a little touchy about people not taking me seriously about my boys. (irritation: working on it)

Enter one of my favorite ob/gyns, and her immunology textbook. She produced definitions, prodded a friend for a quick fly-by opinion, and then for a reference. Enter a Mike the younger, a thoughtful fellow, gentle with the Eldest and carefully listening to me. I slapped on my best non-crazy mom face, did my best to ignore the hot chocolate drying on my pants (oooh, itchy), and worked to be precise about something that echoed in my head as what the hell? Mike the younger listened carefully, explained the possibilities he was considering, and why. He grinned at the Eldest's jokes, quirked a pleasant eyebrow at me, and went to find his boss.

Mike the elder walked in, smiled - and whipped a couple of chocolate pops out of his pocket. He held them out to the boys, who stared at him. Want some dum-dums? he asked. The Toddles looked at me. That's so sweet of you! Do you mind if I look at the ingredients? I offered an apologetic smile. The boys have a lot of allergies. The pops disappeared back into his pocket. Oh, said Mike the elder. Allergies I don't know. Kashrut, though, I do.

Yes. He did. I could tell by the sudden stiffness of his shoulders. (note to self: don't make the doc cranky)

Mike the elder quizzed the younger, correcting and interrupting him as he saw fit. In the face of this certain superiority, I found myself wanting to argue, but I could see the barest outlines of the elder's analysis. He dismissed this bit of information, focused on that - it was hardly pleasant for Mike the younger, but it was unarguably educational. As the Mikes had their pedagogical moment, the Eldest and the Toddles discovered the snack in my bag. Quietly, they began to bicker.

As Mike the younger's skin was thickened by his mentor's methods, my boys ratcheted up the bicker. Cooperatively, the Eldest hopped up on the exam table, ignoring my peacemaking while stretching for a Mike. A Mike pronounced something about the Eldest's heart rate, while the Toddles did an end run around my hands and the see, honey? won't this be fun/yummy/keeping out of trouble-worth? The Mikes frowned over the Eldest's hyperflexible joints, informing me that these were not a wonderful thing in a child with hemophilia.

Oh, I said, thinking this over. I have hyperflexible shoulders, or so my yoga instructors used to say. He must have got it from me.
Mike the elder frowned at me, unamused. Yes. But you don't have hemophilia.
I spent a completely unnecessary fourteen seconds explaining that yes, in fact I do. And then spent nine horrified seconds watching Mike the elder frown at me. (Ohno the doc thinks I'm an idiot what will he do he won't take me seriously he won't treat the Eldest must fix he's mad ohnono)
Oh, I tripped over myself. But that would be different for severe hemophilia. Mike the eldest forebore to glare. Right, I babbled. More significant for a severe.

(sigh)

In the corner, the Eldest grabbed a cracker from the Toddles' hands, leaving the Toddles planning his vengeance.

Mike the elder chose a diagnosis that Mike the younger had marked as unlikely. He explained other diagnoses as improbable, whisking through a quick explanation of inflammation without wondering if I understood words like osmosis and idiopathic, but certain that I wouldn't understand plasma, or vascular pressure. (score: 7.2) Mike t.e. won points for his certainty, and for choosing the diagnosis least likely to involve life-threatening outcomes. He did not, alas, persuade me of his diagnosis' accuracy.

Mid-lecture, the Toddles made his move, swooping past adults to belly up to his brother. I want some crackers, the Toddles shouted. Give me some! (I said something ignorable) The Eldest, coming late to his share, stared his sibling down. They are MINE, said he. (I caught the Eldest's eye, and said something similarly ignorable) The Toddles inhaled deeply, and Mike the elder leaned over. Grabbing the package, he looked the Eldest in the eyeball. I am trying to talk to your mother, he said, and I can't do that while you are being loud. Give. Him. Some. Crackers.

The Eldest growled, and did.

Driving home, I reminded myself that a good clinician is not, alas, always equipped with good people skills. But it does not help persuade a mama as to the clinician's diagnostic skill. Although it does warm a sneaky cockle of me heart to see the Eldest, his hands firmly on the bag of crackers, pulling back as the Mike tried to yank it away....

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* some bleeds are deep enough in the muscle or joint that you won't see redness or bruising for a long time. Sometimes, you might not see bruising at all, but you can see swelling, the child will show pain, and you can feel heat. Days, even a week or so later, the old blood rises to the surface, making patterns of blue, purple, browns and yellows. But that takes a while. It's unnerving to treat a bleed that you can't quite see with your eyes, and we're urged to treat quickly. Faster treated, faster healed, saith the hematologists - and indeed, it's true. The odd downside is that if you treat that quickly, you're much less likely to see any bruising later on, leaving the Man irked: he likes his empirical evidence. Me, I can deal.

2 comments:

joy said...

I have nothing intelligent to say, so I'll say this: If you'd been in Aus, they'd all be named Bruce instead of Mike.

xxoo

Rachel L. said...

So, will there be confirmation of mike the elder's diagnosis? Empirical enough to convince you and the man?
Good luck!
Shabbat Shalom, too. (may it be free of the need for any more mikes)
-R