Sunday, January 20, 2008

the ethics of a bleed

The Eldest has a bleed in the joint of his big toe. This is annoying, since his big toe is the first toe to hit the ground (try it), and the one built to carry most of his weight. So, off his feet is our lad, and he's trying hard not to grouse about the ice pack while he exercises his new skills as a reader. The Toddles, surprised and delighted by this change in affairs, is literally running rings around his big brother.

The Eldest has a bleed in the joint of his big toe. This is painful, because joint bleeds hurt like the very dickens, but he's trying to smile and joke where he can. At this point, the bleed is new enough that he hasn't learned to be afraid of the pain, and that fear can be as much of a burden as the actual pain.

This is painful also because a bleed of this level of severity and inconvenience presses on the stress lines in my marriage, as the Man looks at me, hoping that somehow we won't need to treat for the next 7+ days, and I refuse to meet his eyes, instead looking determined, thinking about treating twice a day for x days, then once for y, and how long off his feet, and how to manage at brain is buzzing, and I am unsympathetic to the Man's hopes. Tempers flare - the Eldest's because he's uncomfortable and worried about the bleed, the Man's because his spouse is being unsympathetic as he worries, and mine as I grimly forge ahead, wrestling a treatment plan out of the docs, compliance out of my spouse, and cooperation (if not peace) out of my offspring.

The Eldest has a bleed in the joint of his big toe. This is complicated, and it opens the maw of a series of careful ethical choices. You'd think this would be science, medicine, but it's not - it's ethics. What do I tell the doctors? Assuming that mothers panic and exaggerate, they tend to underrate the Eldest's bleeds. The less experienced the doc on call, the more likely we are to get someone who underprescribes. I could exaggerate to the level that I know will get me the care that I need, but the Eldest must not hear me, must not see past my calm-ish exterior, and the Man would feel validated in seeing me over-report the bleed. (See? It's really not as bad as you say, we really don't need to do this.) He's not trying to avoid the work, mind you, just trying to hope that there's a different reality.

Should I call at all? I know the basic protocol for bleeds, and the hemophilia team has repeatedly hinted that we are ready to manage standard bleeding without them. This is standard, I suspect, and I know that my learned protocols are more aggressive than the on-call doc's. What if I get it wrong?

If I overdose the kid it does no harm, and I can wait until I get the specialist we know, rather than the weekend-and-evening crew. Still, for all of my hard-won competency I have to call, because only a doctor's orders will persuade the Man that we really do need to treat for x days, y times per day. Depending, of course, on a range of findings (additional swelling? additional pain? response to clotting meds? reduction in swelling/pain/irritation?), so decision trees, here we come. And telephone, here I come. It wasn't until the visiting nurse (there by coincidence) named the bleed as such, that the Man gave in and admitted that it was so.

She apologized to me, saying, I saw his face, hon, and he looked like he was hoping I'd tell him it wasn't a bleed. But when the child flinched every time I so much as breathed on the foot, well, what else could it be?

What else, indeed. Having named, planned and labelled this bleed, what do we do about the ancillary issues? Inevitably, the doc-on-call doesn't offer a plan for pain. I can give the child acetaminophen, but it masks the body's reminder to avoid using the foot. With the acetaminophen, he's pain-free. Without it, he's less likely to use the foot early and cause a rebleed. But - the trump card - with the acetaminophen, he's calmer, less emotionally effected by the event, and will sleep better.

The Eldest has a bleed in his big toe. Yes, this is so. There will be days of clotting meds, needles hither, thither and yon, me carrying the kid up to the bathroom, and a lot of everybody's more irritating habits becoming suddenly insupportable. (Tonight, for example, I had to flee the table when the collective Y-chromosomal chewing reached a deafening, nauseating roar. Um.) It is, as someone said to me once, just stuff. Stuff happens, and it's happening now.

Even so, in all of this there is one happy point: Mum, you make the best scones in the world! Considering that tonight he spat my cod into his napkin (took too long to chew, he said), I think I'll take my laurels where I can find them today.
The Eldest's Best Scones

1/2 c tapioca starch
1/4 c teff flour
1/2 cup potato starch
1 1/2 tsp guar gum
1 Tb baking powder (corn-free for us)
1/4 tsp baking soda
1/4 c plain sugar
1/2 tsp salt
3/4 tsp powdered vanilla
shake of nutmeg
2/3 c milk (I used rice milk, Whole Foods' 365 brand)
1/2 tsp vanilla extract (I used alcohol-free, grain-free from Trader Joes')
1/3rd c. shortening (I used virgin coconut oil, solid at room temp)
demerara (large crystal brown) sugar, for sprinkling on top

Preheat oven to 375F.

Mix all dry ingredients together in a bowl, then dump in wet ingredients. Mix until fully blended - batter will be thick and sticky. Spray/grease a pie tin, and pour in batter. Spread batter around pie tin, and sprinkle sugar on top.

Bake at 375 for 15 minutes, then turn up oven to 400 F and let bake for 10 minutes. Serve with jam!

Note: my apologies for the lack of photo - I made a second batch and fed the guys the first. When I went to photograph the second dish of scones, most of it was already gone...


The Blogger said...

You wrote: "What do I tell the doctors? Assuming that mothers panic and exaggerate, they tend to underrate ..."

In my programing career, we sometimes had a customer who assumed we were lying whenever we explained when the computer system would be finished. Sometimes we really KNEW when we would be finished, and then the problem was: how do you morally, and ethically communicate the truth? The easy way was to lie. Say, we knew would be done in two months. So we said we'd be done in five weeks, and the customer would assume two months; or three months; or a year.
The hard way was to say: "We'll be done in two months. Really. We know what we're doing this time. Look, ..."
Oh, it was hopeless.
- The FIL

debka_notion said...

the blogger- In that case, you could that the Scotty approach (from Star Trek), except that rather than needing to claim that you'll take longer than you actually need, you just say how long you need, the person will presume longer, and when you actually deliver the thing on time, then by golly, you're incredible.

The Blogger said...

We would not have seemed so incredible as you think. Our customer was synchronizing building schedules, hiring, purchasing and furniture moving to our progress dates. Finishing early is usually better than finishing late, but not as good as finishing on time. We would have been raked over the coals for not advising them we wculd finish earlier. Sigh ...
The FIL again.

dykewife said...

i'm sorry that eldest has a bleed and is out of sorts :( poor duck. um...would a pair of crutches work so that he can get to the bathroom on his own? i mean, it's gotta suck for him to be carried about.

oh! i found an interesting store yesterday. i havne't been in it yet, but it's called "the gluten free zone". i'd never seen it before, but reading your blog has made me more sensitive to that.

mama o' the matrices said...

FIL, in fact there was a time when I would measure things, and offer estimated or precise measures to the doc on call. I read notes in the Eldest's medical file later, indicating that they thought I was exaggerating that, too. So I gave up. How one exaggerates something as specific as 3/4ths of an inch is beyond me. Now I just explain, and then try to decide from the treatment plan if I think they're taking me as seriously as they ought to.

dw, I wish they gave crutches to the little guys, but they don't. You have to be 7 or 8 to get crutches, apparently, and then it puts stress on the shoulders - risking further bleeding. What I really need is some non-embarrassing, quasi cool way to propel the Eldest in the hallway. Hm.