Wednesday, January 25, 2012

A debrief in the wee hours

The year of the dragon has begun with a bang....and not the sort that I would like. It's 1.30 am and I'm sitting here next to my sleeping child, listening to her breathing, just in case she stops. She has just experienced her biggest seizure ever and it's left her exhausted and me completely freaked out. Since these seizures started last year (August), she has only had 4 or 5 seizures that Steven and I refer to as 'the big ones', the rest are nightly and are almost non-events in comparison. They are not, of course, but when you compare them..... From the both of us sleeping soundly in our respective beds to a noise and a crack as Ayla's head hit the end of the bed, sending me racing into her room just next door. Ever noticed how far away your child's bedroom seems when you need to get there quickly....her room is right beside ours but it felt like a 100m sprint. The seizure began like most others. Back arching, jerking, noises of frustration......and quickly escalated to not breathing, continuous spasm and deep groaning......and my heart pounding in my throat. The spasm stopped and I waited for the aftermath that usually follows....but then the spasm started again.......and again.......and again. Fear and panic started to take hold as I raced down stairs and across the kitchen to her emergency medication. "Fuck! Why aren't these in our bedroom?"....because when this type of seizure happens so infrequently you get complacent. I should have known, I've been watching it building for days. They say this stuff (her meds) works in seconds but it took minutes. Minutes and minutes......long, agonizing minutes. The seizure changed straight away but the constant ticks and teeth grinding that followed went on forever. These drugs are supposed to knock her out - that's why I'm watching her breathing - but they don't seem to affect her that way. They make her agitated and restless. I'm so thankful Ayla and I started in a Steiner play group from her birth. Song soothes the savage beast....and I don't think I would have known any soothing songs if it hadn't been for play group. From the description, it probably sounds like the whole thing was over in seconds but, in truth, it was closer to 15 minutes. Did I say minutes? It felt like hours.... If you're asking yourself why I'm sharing something so personal......what else do I do to debrief? I don't know how he does it, but Steven always seems to be working when the big ones hit. I doubt that there will be much in the way of sleep tonight.

4 comments:

Shannon said...

I am always amazed at your clarity and eloquence... "songs soothe the savage beast"...may knowing that so many people hold you in their thoughts give you some comfort in the lonely small hours. Xx

nettie said...

Oh Lis. I have tears in my eyes. Please know that my thoughts are with you. And your little cheeky rascal. Both her strength and yours are truly amazing.

Gina @ Inky Ed! said...

Hugs, but beautifully written - just sad you had to write it.

Susan, Mum to Molly said...

Sorry you both had to go through this Melissa...

If her rescue med is taking that long to work you might want to double check that they have given you/her the right dosage and the right administration route.

Our M's rescure med for example works much faster if it is given/taken buccally (absorbed by the cheek membranes), rather than swallowed.

Took us a while to perfect the art of giving it though (and have even seen very senior nurses giving it less than perfectly).

Email me if you want to discuss specifics...

Huge hugs, Susan xx