Tuesday, July 11, 2006

today was…just another day.

And a damned full one, at that. Lessee…

8 am: doing factor with the Eldest, as part of my role as dangerously-undertrained civilian. Having committed to my chosen vein, I moved forwards with my wee needle, realizing as I did that the sucker was going to roll away from me. It did, and the vein blew. Refrained from teaching the child new and interesting words. Took a deep breath and rescued the poke, managing to get the factor into the child (and uncooperative vein). Slightly stunned by my success, swaggered upstairs where I barely resisted collapsing back into bed. (See glossary for italicized terms)

10 am: wrestled babes and box of useless technocrap into and then out of the car, en route to the techie heaven that sold us the electronic mess. And lied about its having been refurbished. And got the rebates wrong. And then failed to fix it when it didn’t work. And then kindly offered to exchange it…for something of the identical price. Um. No.

10.25 am: played peekaboo with the babes while waiting out a flunky who wanted to handle me herself, sans manager. Managerial type appeared, reviewed the situation with me and handed me over to another manager. From this height on the corporate food chain, I arranged an exchange for a brand new computer, worth $150 more. Cost to us: $3.47, for arcane reasons. The babes and I graciously accept, and wrestle the possibly more useful box of techno-stuff back out to the car.

11 am: sit with my therapist, who is dazzled by the change in me. Somewhat dazzled myself, I then begin to second-guess it. What if I’m just riding an energy high? What if when it peters out, I’ll crash and burn? How low, exactly, will I go? She reassures me: yes, you will crash. But hopefully less burning than last time. I wander out, impressed by my own inability to find the grungy lining in this silver cloud.

1-3 pm: run umpteen small irritating errands that I’d been avoiding. Carefully don’t think about sine waves and their application to my energy levels. High, low, high, low. Pushing the stroller in the humidity, begin to turn a respectable shade of chartreuse.

4 pm: arrive home with the Eldest, who is in fine spirits. Notice that the lump on his left ankle has swollen until the ankle is indistinguishable from his calf. Debate whether this is a bleed or an impressive bug bite. Given that he had a dose of factor this morning, he should be awash in the stuff, so a bug bite is more likely. Watch his nose begin to bleed and remember the bloody stain on his bedsheets. Decide that it very well might be a bleed, and try not to think about the immunological implications of the factor dose being insufficient to his needs.

5.05 pm: Give up. Stick ice pack on kid’s ankle and settle him on the futon in front of the TV, with a big glass of juice, just in case we need him hydrated for a new dose of factor. Kid is delighted and I anticipate dramatic reenactments designed to get him juice and the idiot box. Call Dana Farber to review situation with hematologist. Forget the hematologist is a new fellow, and knows less about hemophilia than I do. Hematologist urges that we give lots of factor, right away. Somewhat hesitant, we watch the kid for a while and then do so.

Meanwhile…. the babes is watching as his big brother is benched for the night. He considers the lack of small boy running around and decides to rectify the situation. Thoughtfully, he lets go of my hand and takes a few steps. He then reaches down for a toy and falls flat on his face. I gasp, catch him millimeters from the ground, and marvel at the maintenance of balance in our world.

One boy sits and another rises. Today, he is ten months old.

Dinner tonight:
tilapia fillets, breaded with Nayonnaise, spiced, and cornflake crumbs. Must remember that cornflakes have a very different flavor than bread, and adjust accordingly.
the last of the corn-black bean salad.
baby gherkins, pleasingly sharp.

blew: broke, usually rendering the vein unusable for a week or two.

factor: clotting protein, or clotting factor. The body uses 12-13 to create a clot, and different bleeding disorders involve different parts of that process. The most common factor deficiency is factor eight, as in hemophilia A.

fellow: a doctor who has completed his internship, is a full MD and is pursuing advanced training in a specialized field of medicine. New fellows start every July, which means that July-October they are serious newbies, and their advice needs to be weighed carefully in light of their experience. Usually, they know this and are eager to work with the families, using the families’ experience to offset their own lack thereof.

hydrated: the better hydrated a person is, the easier it is to find a vein on them.

immunological implications: if a dose of factor doesn’t seem to work, this can indicate that the immune system is creating antibodies to the factor. For kids who make no clotting factor at all, this is not so uncommon. Our kiddo made antibodies and was persuaded to stop. However, this doesn’t mean he won’t start again…

poke: means more or less what you think it does. No, not that. The implications of saving the poke are that the needle is never removed from the skin, because if you do you must start over. No reusing the needle allowed, and it’s very unwise to poke the same vein twice, unless you are extremely good at IV pokes.

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