Saturday, January 13, 2007

in haste (with updates)

the sabbath is closing in, and oh, jeez, but I need a shower.

The Eldest has a muscle bleed, which leaped from minor to major. (new to the blog? The Eldest has hemophilia, and you can learn about that here or see another of our experiences with it here.) His right thigh is swelling like a balloon from internal bleeding, and looks wholly unlike the boy-shaped leg on the left. We should rename it Bernard or something, because I'm nearly persuaded that it's a separate entity. Surely the Eldest himself would not countenance such independant, deleterious behaviour - or would he?

A dose of clotting factor yesterday morning just disappeared into the ether, and instead of halting the bleed, the leg swelled steadily, until the child couldn't use it, and even being carried was painful.

This is old school hemophilia - hemo before preventative doses that kept bleeding from starting, before the precisely measured knowledge of how the child's metabolism uses the clotting protein, at each stage of a dose's lifespan. I do not like it one bit.

And nor does he. We've entered the pain control stage of this bleed, and having doubled the dose for today, I'm really really hoping that this will be sufficient to bring this thing to a screeching halt - preferably before the pressure increases to the point that we'll be dealing with nerve damage.

I want to wail. I want to howl. I want to stick my head in the sand and pretend that all is well. Above all, though, I want to trust: my son, his medical team and the Man and I that we will see him through this, that we will see him running and wreaking a boy-style chaos. A rgrim determination is ruling me right now, and I am embracing it. My child will be well. My child will be well. I will not have it any other way.

But not today, not tomorrow.

Update: 1/13/07.
Thank you all for the comments of support! here's a quick state o' the boy:
This morning, the Eldest's leg was still swelling from bleeding overnight, but we seem to have stopped the bleeding. Certainly, the leg's circumference (bleed, meet measuring tape) did not grow between this morning and this evening. So perhaps we've finally worked out the right dosage, and maybe all the ice is helping. Our homecare nurse is not, however, happy with either the progress or the Eldest's rate of improvement. My standards: today he is eating (pain stripped away his appetite Thursday and Friday), he's grumpy about not being able to walk around, and he was able to sleep better last night (less pain). I'll take it.

My biggest fears now are that the doc on call will decide not to give him more clotting factor tomorrow (she said she wouldn't, but that's only the opening salvo), and that without a cushioning level of factor in his system, he'll stress the fragile, healing muscle, and cause a re-bleed. And, most petty, I know that on Friday he has his interview at a school that is being honest about their concerns re:his medical issues. A happy, healthy Eldest will do wonders to set their minds at ease - a drawn, limping Eldest will confirm their worries. Oy.

meanwhile...
A member of the bleeding disorder community passed away today. He was a young boy, who died of severe head trauma (bleeding inside the brain). Baruch dayan emet (blessed be the True Judge) - and if He has a moment, I'd like a word.

3 comments:

dykewife said...

oh dear, the poor little guy. i hope he heals up well. :( my thoughts are with him.

joy said...

I'm using all my force of will to tell Bernard to play nicely or go away. *stomps*

Love and expectations of much happy-boy-chaos to come...

mother in israel said...

Refuah shlemah--praying that he is restored to health very soon.