And so it wasn't until I'd finished packing for respite, and had time to sit down between folding clothes, counting meds, delving deep into the freezer, giving her nebs and suction and chest physio, that I had time to work out that she probably wasn't really well enough to go. Sitting, panting, watching me pack, was a girl with a purple face, a rising temperature, and the beginnings of a glazed panic stretched across her face.
So I tossed her back into bed and cancelled respite. And, of course, she instantly calmed down, her breathing eased, and if it weren't for the gentle twitching and general "not really here-ness" of her face, you wouldn't know there was anything wrong.
But we tweaked our plans; an online shop instead of a physical one, suitcase gradually unpacked and bits of kit resuming their spots in her over stuffed bedroom.
Grannie was going to take Amana as I dropped Imi off; they went out for fresh air anyway. A phone call from the hospice, and a home visit offered right when I'd been aiming to call them to query antibiotics. A protocol being rewritten to clarify the links between hospice and community nursing.
More phone calls then, and my simple phone call cancelling respite had set a series of links in action. Respite sent staff out this afternoon, and Imi has been enjoying a shower, a beauty session, and some music making. She's just getting into bed as I sit and type this; respite still even if not quite what was planned.
And more respite on the way; a seamless linking of respite nursing and homecare tomorrow, with the offer of more help later on if I need it.
One phone call from me, and one happily timed hospice contact, and one support package for the next two days and beyond. Others taking on the administrative work which can be almost more exhausting than the caring, taking over to ensure that my own energy can be concentrated where it's most useful.
Result? One calm household, one child who has had a lovely afternoon even if only really semi conscious, one parent who has had a peaceful afternoon, and who has had a physical rest from caring and a mental rest from being the on site entertainment, and one little sister who is reassured that her own needs can be met.
There was a time when cancelling respite would have meant nothing but extra work for me, when the burdens would increase right at the time when the burden was already over stretched.
I'm so thankful for the way in which all these different agencies are working together. Not just alongside each other, but actively working together. Community respite nurses going into the respite centre. Respite centre consulting with hospice and hospital. Hospice Drs advising community staff. And me, kept informed, but not having to steer everything. It's good.