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.

9 comments:

Rixblix said...

I'm so sorry. I'm sure you do, but just in case, do you guys have any of the "nose buds" with the ice pack thingys on the bridge and sides?

Rixblix said...

http://nosebudd.com/productinfo.html

This is what I meant...

mama o' the matrices said...

actually, we don't. But I'm going to make one of those squooshy rubbing alcohol/water ice packs tomorrow, which will do more or less the same thing. I make 'em in one of those narrow ziploc snack bags, which fits (kinda) over the nose.

Mags said...

Hi!!! Just so you know, your comment on my blog made my day...so, thanks! I'm super zonked right now (actually, I just got home from Cambridge!) but I'll be back for sure to check out your blog. Thanks again!!

Julia said...

That's a nice shot. And I am glad to hear it's not (at least yet) truly life-threatening.

The fellow totally should be made to do your laundry. I would offer, but... you know...

mama o' the matrices said...

Julia,

well, yes. Of course. And if you want to chuck some of yours in with mine, let me know...I'm driving past your place daily now, en route to/from farm camp!

Don't worry, though - I'll make the fellow do worse than laundry: if I need to, I'll make her CALL HER BOSS. When he's on vacation.

Anonymous said...

That is really scary. I understand you deal with a lot of scary bleeding stuff, but that is really frightening.

I am glad your child has parents taking care of him.

Could it be the actual blood loss and not sleep that caused the not remembering? Lack of enough blood to the brain or low blood glucose can cause someone to be out of it while aware enough to respond at the time with no recall of the events later.

How do you judge when the blood loss is enough to seek emergency attention, not about the hemophilia-specific issues but for attention to the loss of blood in general?

I hope you all have a healing and uneventful Shabbat.

mama o' the matrices said...

Anon.,

I don't think it was the blood loss that caused him not to remember, mostly since I note that his mental acuity is normal. He just tires a little faster in the day, looks a little more limp. I had a nosebleed cycle that landed me at the ENT (with collaboration with the HTC folks), and I remember feeling like I just couldn't think.

So, we're playing a lot of board games right now, and I'm listening to the kid think. It's a balance - I don't want to panic, and I also don't want to overcompensate for my concerns. So.

If I saw serious whiteness to the lips, I'd bring him in. If the nosebleeds couldn't be stopped - completely, including oozing - I'd bring him in. And if he looked sleepy at the start of the day, I'd bring him in. And if I beat HIM at chess, I'm bringing him straight in.

Happily, we're so quick to respond that we've not had continuous flow of blood with these nosebleeds, with the exception being a couple of nighttime bleeds, and only one was sufficiently copious to set me off.

Still, we're watching closely. Because maybe we underestimated the effects of the bleeding? Maybe not.

Off to char dinner. Shabbat shalom,

joy said...

story: oh my dear goodness, gah

picture: LOVE

thoughts are with you...