Tuesday, March 27, 2007

the Daddy Vein

Four days, five needle sticks. (Editor's note: a 'stick' is a needle-stick, given here to administer clotting medicines into a vein. Specifically, the Eldest's vein.)

I sat back and looked at the Eldest with satisfaction. We did it! I told him. He paused, considered the matter, high-fived me, and moved on. But I intend to linger.

The Eldest has been having a series of small bleeds - a whacked this, a banged that, an oozing something else. My favorite must be the most recent: The floor whacked his cheek, I informed the attending hematologist. I was, after all, reporting the Eldest's own description of the event. A brief, amused silence later, the doc was up to speed and discussing dosages with me. Gotta watch out for those pesky floors...Douglas Adams had a point there. Indeed, the trick is to miss the ground.

So, we had four doses of factor in four days. I missed the vein once only - a back of the hand, small wriggly vein which I always miss. And I was banned from one vein, the Daddy Vein.

Given the shortage of strong, accessible (by me) veins in his hands and arms, the Eldest and I have evolved a series of semi-successful methods to negotiate which veins get used, and when. The Eldest, for example, is very happy to offer up one of his left antecubital veins (inner elbow), but refuses to discuss having a different vein in the same area used. Or, possibly, used by me. It's a matter of his familiarity with the vein, since if it hasn't been used much, he worries that poking it will be painful. More frequently used veins, however, do not hurt - or so says he. And a sharp rise in stress means that he is less willing to tolerate experimentation by the civilian with the sharp pointy object...go figure.

Thus, the negotiation. Push the kid hard and factor (clotting med) time becomes a power struggle and a miserable one. Keep it pragmatic, and the needle stick is like - as Jill says - brushing your teeth. It's a PIA some days, unnoticeable on others. But I digress.

So, we referred to his treatment log (we record which veins we used, if they held up, if I missed/got them), and put together a roster of usable veins. One missed vein later, however, we were a vein short. What to do?

The Eldest staunchly refused to let me touch the Daddy Vein. This was, he insisted, Daddy's spot - nevermind that Daddy hadn't picked up a needle in months. I bargained, reasoned, and generally did everything futile that can be done with a stubborn, exhausted five year old in pain. Sigh. Sometimes the partnering-with-my-kids idea is annoying.

Muttering quietly to myself, we tromped upstairs, where the Eldest asked his father to perforate his sanctified spot. Shaking slightly, the Man picked up the needle, positioned his thumb in the spot guaranteed to hold the vein steady while also blocking a clean poke (neat trick, that), and nonetheless managed to get into the vein. I attached the syringe full of factor, and bam! The Eldest was clotting. The next morning, when I stumbled down to get my coffee brewing, the Eldest hollered from the table, Mum, I'm waiting! I'm ready to do factor! Chipper and unhealthily perky, the kid was happily waiting for his morning needle. I'll be damned.

Two days later, I looked at the child. We did it! I told him. Five, ten minutes later he came back to me: This brings beauty-ness to my day, he informed me. I can tell that this is going to be another happy morning, happy day, and happy evening.

Beauty-ness, indeed.
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Meanwhile, preparations for Passover continue apace. Thanks to Gluten Free by the Bay, I have a matza recipe that I successfully adapted. The hard part isn't finding gluten-free matza, it's finding matza safe for the grain allergic, plus the nut-allergic. Most gluten-free matzot have either oats or nuts in them, alas. It makes a quick, dairy-free, gluten-free, nut-free cracker, and I think older kids might have fun spreading the dough. I would also wonder about this as a thin, crispy crust pizza - if you try it that way, let me know what happens!

Bread of Affliction for the Afflicted
makes 6-8 small matzot, about the size of mini-pizzas

1/3rd cup potato starch
1/3rd cup soya powder (G-F By the Bay calls for almond meal, which would doubtless taste better)
1 Tb flaxmeal (ground flaxseed)
2 Tb margarine/shortening/solid coconut oil, room temp
3-4 Tb warm water, adding cautiously and more/less as needed
1/4 tsp salt

Preheat oven to 450 F. Cover a cookie sheet with tinfoil, or best of all - a nonstick baking sheet.

Combine dry ingredients. Using your cake mixer, add shortening until thoroughly combined. Then add water cautiously, until the dough forms a non-sticky ball (barely sticky is okay). Use additional potato starch as needed to control stickiness.

Break off walnut sized pieces of dough and roll into a ball. Flatten on the tray, pressing gently with your fingers to spread it into a circle. Smooth out the edges, if you are feeling Martha Stewart-y. Circle will be thin, and perhaps 6 inches in diameter. Prick holes with a fork.

Bake 8-10 minutes, watching carefully that the faux matzot are more light than brown - don't overbake! Edges should be slightly brown, the top white.
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A quick note: there's another baby carrier recall on the market, this one by Baby Trend, who is recalling a backpack carrier. More information is available here:
http://www.cpsc.gov/cpscpub/prerel/prhtml07/07138.html

5 comments:

Lois Grebowski said...

Hang in there mom, pediatric veins are hard to poke...

joy said...

hee hee, bread of affliction for the afflicted.

mama o' the matrices said...

joy - exactly!

Lois, thanks for the bucking-up. He'll get it eventually, I know, but if we hit the anniversary of the port's removal and the Man is still struggling, well, someone take me out for a stiff drink, please.

Lois Grebowski said...

If I'm up your way I'd be tickled pink to take you out for a stiff drink. Drop me a line sometime!

The Patient Connection said...

Take part in an online discussion on haemophilia

Hi

We at The Patient Connection are currently running a research blog or online discussion on the subject of haemophilia

In particular we are interested in haemophilia as a genetic/family condition and any thoughts you might have about gene therapy

Apart from that we would love it if you could share your story or just post useful resources for fellow sufferers.

If you would like to join us please go to

http://www.thepatientconnections.com/blog.asp?uid=28


Thanks and remember your opinion counts

Best wishes

Belinda

PS The link will give you an option to join our formal research community and participate in research into the opinions of the haemophilia community later on in the year.