Thursday, July 31, 2008

the morning after


This morning, the Eldest woke up.

I'm just going to clean you off, said the Man, and gently wiped up the last of the dried blood from the night before.
Whaa?? said the Eldest, thoroughly confused.

Eventually, we realized that the kid doesn't remember the nosebleed from last night. He slept through the mess, through us holding a good 25 minutes of pressure, through 8 ml of Amicar (the nasty nose/mouth bleed medication), through the sheets being changed, through me trying to get the blood off his gunked-up eyelashes - he complained about it at the time, but still didn't wake up enough to remember it in the morning.

Dang. You've got to respect sleep that determined. On the other hand, I consider how much he's sleeping (only a bit more than usual), the dark circles under his eyes and the paleness of his lips. Yep, we've got some anemia going here.

So? WTF is going on here?

Well, Rix, it's not a growth spurt - we weighed him last week. Nor is it allergies, and nor, Lois (and I'm saying this with utter faith, only some of it blind) is it inhibitors. If that were it, he'd be having more bruises and the nosebleeds would fail to stop, or rebleed more frequently. I'm nearly certain of that. Nor is it air conditioning, which can dry out the nose. Alas and alack, but we are mostly a ceiling fan house. Mostly.

Nope, it's just lousy engineering. The Eldest has inherited my family nose - both my mother and my father were chronic nosebleeders, and even the wondrously clotting Toddles gets little nosebleeds. I have one, reliably, every day. There's just a couple of largish blood vessels that are close to the surface, and the placement makes them vulnerable. So, nosebleeds. And I know this cycle well - if you have too many nosebleeds, too close together, the tissues are fragile. Anything will pop the surface, and off you go.

Like tonight, when the Eldest burst into tears and sprayed blood on the pillow. It doesn't take much to set the nose off, and given the nose, it doesn't take much to set the kid off, either. Although, I'll note that me holding vicious pressure on the nose did distract him from his wailing. Either that, or he was too busy adjusting to life as a mouth-breather to continue wailing over who got the fatter pillow.

(The Toddles, sensing an opportunity, wailed also - but lacked that crucial element of drama to get my attention. Still, when I left the room, I took the plumpest pillow with me. It's one of the minor pleasures of parenting, this being fairly unfair, all 'round.)

Nighttimes are a tough time to be a kid. But if we're lucky, he'll sleep through the 1 am dose of Amicar (a PH adjusting medication used for bleeding in mucous membranes, like noses and mouths). And that's pretty much what we've got in the arsenal right now: I called the Hemophilia Treatment Center (HTC) today, and discovered that - naturally - they are all away. Back on Monday, pleaded the second year hematology fellow. Can you wait until then?

I considered the matter. Sensing an opportunity to get off the hook, the heme fellow explained that Amicar is safe to use indefinitely, and nosebleeds just aren't life threatening. I recalled an ENT who would pop a vessel of his own, should he hear this, and drew breath to argue. But the fellow beat me to it, filling the air with suggestions. Try this? (we're doing that, I said) Try that? (doing that, too, I growled) And what about this, this and those? (yes, yes, and yes, I said, holding on to my temper)

Truth be told, nosebleeds really aren't life threatening, unless they fail to stop when you give pressure, apply clotting oomph and readjust the pH of the mucous membrane to suit the clot's longevity. In short, they're only life threatening if they don't stop. And we're not there yet, and as frustrating and messy as this all is, we truly may not get there. It's just soul-wearying to pull the same tricks out, over and over, to create less effective results. But it'll buy us time, to get us past the weekend and the absent coagulation team, and hopefully keep us out of the hands of the new interns in the ER. It is, after all, July.

So, we wait for Monday. But, I warned the hematology fellow, if the kid pulls another really nasty bleed, and the this, this, this, this and that don't do the trick, I'll be in the ER and making her hold pressure on the child. Or she can do my laundry. Either one will do, really.
Note: the photo with this post isn't from this week - note the pinkness of the lips. But, after the drama-mongering of last post's photo, I felt I owed the blog a cleaner shot. So.

so, not me then? him?!


in case you were wondering, it really is all about me. Me, me, me, me, me.

Except when I walk in to find the Eldest sleeping soundly in a puddle of his own blood. Blood caking his face, his tongue, pooling under his face. From his nose, apparently. Experienced hemo-mama that I am, the sight completely freaked me out. Who let the B movie horror flick into my bedroom? Sheesh. And holy mother of someone else's god - that was scary.

And yet still relatively small potatoes, if small potatoes with major irritation sauce. We've had three weeks of this now, with nosebleeds every day or two, sometimes once per day, sometimes twice. Some minor, some not so minor - none requiring a trip to the ER, mind you. Instead, we've kept our regular prophylactic schedule, dosing the kid with his clotting meds - and tossing in an extra medication designed just for bleeds in the mouth and nose.

Foul tasting stuff, that one, but I'd rather swallow it than the blood, he tells me. So, then.

Eventually, we noticed that the Eldest was bleeding primarily on the night before he got his clotting dose - when his capacity to clot was at it's lowest ebb. So, we shifted his schedule from every 48 hrs to every 36, just for a weekend. It helped a bit - but not enough. With the stepped up schedule, the Eldest did better, but he still needed the secondary medication. Stop that stuff, and back came the bleeding.

So, now what? We're stuck in a loop, depending on both medications. And tonight's bleed came while the Eldest's levels are high, leaving us suspicious. He should bleed less when he can clot more, unless the body just isn't getting enough of a chance to heal.

Now what?

I'll tell you one thing, though. Now? It's all him, him, him, him, him. And a bunch of laundry.

oh, child.

Tuesday, July 29, 2008

a frozen pause in the doorway

Q: what's the best way to stop a thinking brain in its tracks?
A: offer it a new and enormous set of opportunities

I seem to be having this absurdly wonderful year. My editor tells me that they are ordering extra copies of the issue with my feature article, because the article's bound to irritate and educate. This alarms me slightly, but hey. There's a teensy bookish thing (nothing to do with the blog, never going to show up on amazon) that really seems to be happening (oh god oh god oh god) and there's a print deadline for the final copy (final? like, as in I can't change it once I hit 'send?' Cripes). And there's a tentative invitation to submit an essay for a collection - a yawn for the resume, but shriekingly new stuff for me.

Holy shit. Don't they know that I'm making it up as I go along? My editor listed me as a 'parenting expert' in something, and I nearly died laughing. Yeah, right. Then I got scared. I'm not fishing here - the label truly doesn't fit. What parenting expert yells at her kids like I do? I bet Ross Greene doesn't. But I digress: point being, I'm making it up as I go.

I comfort myself that I'm still small, small, baby potatoes in the world of publishing. Nobody really knows my name, I can write without the fear of someone pointing and laughing, it's okay. We're not talking fifteen minutes of fame here, we're talking friends and family and maybe three minutes, tops. One and a half, if they are related to me. That's okay. I can be okay with that. I can sit on my perfectionism long enough to be okay with that, long enough to stop trashing drafts and just hit 'send.'

But I seem to be inching past my margin of safety, and I had to shove myself forward to get this far. A column here, an article there - it was pulling mama-teeth to get them out, it was terrifying. Fear of failure? Ha. That's old hat. This is terror of failure, mixed with equal parts of terror of success. Because success, naturally, comes with the potential for even bigger falling on one's face. And yet, it's all so silly. You want a real problem? Real drama? It's not happening on my blog today.

Not that the perspective helps me any, mind you.

Happily, I now have writer's block. Drag that out another week or two, and it should handily slam a few of the open doors for me. Handy, that.