Diary of a night

6PM and our carer arrives to help put the girls to bed. Washing Mog's hair is a tricky task at the moment and involves 8 hands. First we take Little Fish, strip her off and put her in the bath with an inch or so of water. Next the headrest from Mog's chair is removed, the chair itself is tilted back as far as it will go, and she is placed in the chair with her head over the bathtub, hair dangling behind her. The carer mans the showerhose, and I take the place of her headrest, trying to simultaneously support Mog's head high enough to keep her breathing whilst at the same time keeping it low enough that when the water from the shower is directed over her head the majority of it will end up back in the bath and not on the ceiling, the walls, the wheelchair and myself. Little Fish is responsible for bubble control, a demanding task involving gathering handfuls of stray lather and clapping her hands together to ensure the foam is evenly distributed across the bathroom and everyone in it. That's 6 hands, where are the missing two I hear you ask? These are Mog's, and over the past four weeks we have learnt it is wise to cover these with a heavy blanket whilst washing her hair, or her spasm causes her arms to fly out and knock both carer and myself into the bathtub with Little Fish.

The hairwash over, our carer retreats to the kitchen to dry Mog's hair whilst I wrestle with an octopus extract Little Fish from the bathtub and insert her into her sleepysuit and then to bed. Hook up her Nippy, turn off the light and leave her to it. Carer and I then work as a team to get Mog into bed, washed, changed and settled for the night.

7PM and both girls are settled, carer leaves. I sit down for 5 minutes at which point Mog makes her existence known. Going in to settle her and sort out her evening medications I become aware of a gentle aroma emanating from somewhere near the centre of her bed. Wonderful, the laxatives have worked at last. Less wonderful, we have no carer until 8AM and changing Mog in her brace takes two people, one to support her on her side with her knees in a safe position (i.e. not putting pressure on her recently broken hips), and the other to clean her up. As it turns out, a partial job can be carried out by just one person (myself), but only by contorting myself on the bed with Mog, using one of my knees to support her head and another to support her legs, whilst reaching over her body to mop her up - a position which makes it impossible to see what I am doing but thankfully one which Mog seems to find hysterically funny. Unfortunately her laughter causes her arms to wave wildly catching me a fair few blows to the face as I attempt to help her. I manage to sort out the worst of things but cannot possibly change the liner to her brace by myself without serious risk to her surgery sites and to my back. So I settle for packing the soggy bits out with cotton wool and one way liners, settle her on her back again and hobble off the bed and out of her room.

8PM and the next round of drugs for Mog, she also insists on a change of music, having suddenly decided The Laughing Policeman is the best song ever. Smashing.

9PM and the house is reasonably silent, Mog is snoring and Little Fish's Nippy is hissing gently, I go to bed.

Midnight and Little Fish's Nippy beeps. I go to investigate and find she has wrapped the air hose around her arm. Disentangling her I settle her back to sleep and head for my bed.

1AM and the next round of medication for Mog. She is awake and unhappy, I spend the next hour trying to settle her, lots of seizures and spasm. Finally a slug of diazepam takes effect and she settles back to sleep.

2AM and I crawl back into bed. Barely have I turned off the light when Little Fish's ventilator beeps again. This time she has managed to push the mask off her face and it is trying to breathe into her neck rather than her nose. Since she doesn't actually have a tracheostomy, this is fairly unsuccessful.

2.30 and it is beeping again, and continues to alarm every 5-15 minutes from then until 4.20, when I cave in and remove it, reasoning that Little Fish has had a good ten hours of decent breathing by this time and so the benefits of sleep for both of us probably outweigh the benefits of a constantly alarming ventilator.

4.30 crawl back into bed again where I am now too tired to sleep. The body is willing but the spirit is racing. Eventually drop off shortly before

7AM when the alarm goes, it's time for Mog's next round of medicines and time to start the day again.

Pass the coffee someone
Tia