Tuesday, September 05, 2006

oh me, oh my

I know there was something else that I meant to write about, but today has driven it right out of my head. (Something about kitchens, no doubt.)

Did I say 'my head?' Who the hell cares about my head? Listen, o readers, as I sing the tale of the Eldest's head.

On Saturday, the father didst perforate his firstborn, searching for a new vein. The factor was given, the clotting commenced and lo, it was good.

On Sunday, the child scaled fantastic heights in search of some toy, quickly forgotten in the salmon-leap of a hardwood clock, which introduced itself, impolitely, to the side of a young skull. The clock, astonished at its own temerity, fell to the ground, where the force of its leap split it into three. The child, equally astonished, was soothed with icepacks and maternal knuckles.

On Monday, the family didst wander, arguing, in the wilds of Weston where, unbeknownst to them, part of a nature preserve had been sold off. They stumbled upon a deck chair and sprinkler system, forcing them to acknowledge the gross error of their guide, one Tougias by name. Having roundly disdained that Tougias, the family repaired to Lands End, where the Eldest proceeded to split open his temper, to match his scalp. An unknown voice issued forth from his mouth, and his mother didst wonder and worry.

On Tuesday, the Eldest didst explode once more, and his parents conferred regarding his explosions and the clock's leap. And so the family did consult with and voyage towards the halls of modern medicine...

There comes a time when you accept that your time is no longer your own. There may even come a time when you embrace the familial chaos that is truly in charge, and attempt to adapt to it, rather than the other way around. Most days are not like that - for me, anyway. But on days when you absolutely, positively must go to the ER, if only to find out if the person spewing fury is your child or someone alarmingly else, well, on those days the urge is to mutter things like 'screw it,' and then feel immensely relieved. For this one day, it doesn't matter if you do the dishes, make the phone calls, roar at unscrupulous medical billing idiots. All you have to do today is make sure that your kids are in as good shape or better at the end of the day as they were at the beginning. Fine - I can do that.

For kid with hemophilia, the big fear is a head bleed. Yes, bleeding into the joints will screw up their joints, and yes, muscle bleeds can do fun damage - but usually you can catch all of that quickly enough to heal it, and kids heal well, given the chance. But pressure on the brain? It's the hemo-mommy nightmare, beaten only by the reality of inhibitors, and kids for whom the clotting medicines don't work. Mine was one of those, but not anymore. We hope.

So when I saw behavioral changes, so dramatic and so coincidentally right after a nice healthy wallop to the head, I had to wonder. There were no other neurological signs of a head bleed (nausea, headache, change in appetite, difficulty with fine/gross motor skills), but there was this. Is this a problem for parents or medicine? We didn't know. But the pattern led us to call and ask the question, and the hematologists to call us in for a head CT scan.

Yes, CT scan, and oh yes we've had them before. Thirteen, to be precise. All done with child-level radiation (apparently that makes a difference) and done despite that these CTs only catch about 5% of microbleeds. But they'll show a big nasty bleed in a heartbeat, and the rest you treat for, just in case. And no, the kid doesn't glow in the dark. Wait - lemme check - um, no. Still not.

Typically, we'd sedated the Eldest for this sort of thing. The scanner is loud, the kid is gently held still and verbally instructed to be absolutely, completely still. Can't even suck his thumb for this, so most self-soothing methods are pretty useless. Add in the distress of whatever sent you to the ER, plus the displacement and shattering of routine thanks to being in the ER, and well, a CT could very well be the last straw. But now he's four and a crucial half, and I rather thought he could choose.

I laid it out for him, and he chose to stay awake. We talked about the scanner, what it looked like, what it would be like. The nurse helped, showing him how to lay flat on the gurney (we used the treatment room bed for rehearsal), turning down the lights and the nurse and I made the thumping, whirring noises of the scanner. The Eldest decided to pretend he was a spaceman-engineer, with "eight bags of air on my back!" Off to fix some poor space shuttle.

Out in the hall, the nurse looked at me searchingly. "D'you think he can do it?" I shrugged. "Worth a try," I said, noncommittally. "I think he just might," she mused. "He's something, that kid. Clearly you really talk to him, share thoughts with him." Loving hearing my kid praised, I resisted the urge to shuffle my feet and say 'aw, shucks, ma'm.' "Well," I said," I do tend to talk an awful lot..."

And off we went, accompanied by a radiology tech named Faith, who was absolutely willing to extend some to us. Once in the room, the Eldest looked uncertain. I offered to lie on the gurney first, and Faith obligingly moved me up, down, back and forth. I giggled, and invited the Eldest to join me. He, however, looked concerned and expressed a need for the bathroom. One pee-run later, we gave it another shot.

It was one of those experiences where I feel myself working at my best, and am crawlingly grateful for this small, determined, trusting little person with whom I've been partnered. He was scared, oh yes, I could see his face beginning to scrunch, as if he wanted to cry. I sat on the gurney facing him, my hands under his hands, and reminding him that my knuckles were there and ready to be rubbed for comfort (yes, comfort and no, I don't really understand why it works, either). And I told him a story.

We told the epic saga of the spaceman engineer, who had come to help a space shuttle with engine trouble. I timed the discussion of the engines to suit the roaring of the scanner, reshaping his fears into something fun, even silly (although laughing was verboten, alas). The space shuttle was trying to deliver a crucial load of feijoas to Neptune, where the people were sadly all out of feijoas, and were anxiously awaiting a delivery. Could the spaceman engineer fix the engine and get the shuttle on it's way? Apparently, he could. The Eldest listened to the story, and politely didn't comment on it's rather abrupt ending. But then again, neither of us wanted to hang around longer than necessary once the scan was done...

Oh, I was so proud. The technician was delighted, and Faith swooped up the Eldest for a gigantic hug, admiring and effusive. And oh, but I was grateful for the chance to reestablish that bond between us, the trust and partnership. In the mundanity of his life, that bond hasn't been needed, and it was sorely strained by the appearance of the babes. To have it back and shining is a thing we both needed.

And later, after a quick side trip and a polite request, I was also in possession of evidence that my child does indeed have a brain, even a working one - setting aside the evidence offered by his tendency towards mountain climbing...

oh, yes. And the scan was normal. Assuming it's correct (if it's wrong, well, the kid's floating in an internal sea of factor right now anyway), then that's the good news...the bad news is that we now need to do an exorcism.


naomi said...

when boy was 3 months old we had to take him into hospital for an emergency ct to see if he had hydrocephalia. i've had soem worrying times with him, but that overnight trip and day was the worst of it. we were lucky, he just has a big head. i don't know what i would've done if things had worked out differently.

you're an amazing woman with amazing kids. that your son isn't scared to be a "normal" kid for fear of injuring himself is a testament to your ability to let him be that normal kid.

and i love your recipes :)

mama o' the matrices said...

Glad you like the recipes! Good food and small wriggling people giving hugs are the best things I know.

Ooh, hydrocephalia. Our second surgery with the eldest, we were all set to go when this young girl with hydrocephalia came in. Apparently one of her shunts had gotten blocked, and the pressure was building on her brain. I happily agreed to wait while they raced her into the OR (not that they actually asked us), and snuggled my little fellow, grateful not to understand the look on the girl's mother's face.

I think of two kinds of medical situations: one, where the body is working against itself, and two, where the body is simply failing to do what it ought - of those, i vastly prefer the second.

Hydrocephalia. Oh, my. It must have been so scary, naomi.

joy said...

I'm amazed at your ability to always find such beauty and love in all the trials thrown at you.

Love to your boys, and their mum.

Hope the exorcism goes just as smoothly. ;-)

Anonymous said...

OY VEY! I read this post with tears in my eyes and my hand over my open mouth in fear...a head bleed! (Side note: I recently retired from a position with a facotr provider so I second and third your concerns over head bleeds...very dangerous!)

Relief at last to find out his CT scan went well.

Hang in there... You are exhibiting tremendous grace under tons of pressure!

Hugs and love!
Lois Grebowski (Lowdown From Lois)
P.S. please forgive if this is a duplicate...having problems posting comments on the beta version.

mama o' the matrices said...

Hey, Lois - is this you?

Anonymous said...

yes, the beta version gives me fits trying to post...

Please don't hold it against me! LOL!

Anonymous said...

Anonymous is me...lois...:-D)

on the raod with hubby, no longer working, therefore no brain, bwahahahaha!