Wednesday, 17 December 2008

A Woeful Wednesday

A definitely woeful night. An early night for once, in bed and asleep before ten, and then woken at 11 by Mog's feed pump which I'd forgotten to turn off, oops. Mog definitely woeful but settled with the aid of the sedative I'd been congratulating myself for not needing earlier in the evening.

Midnight and Comeback start howling at the moon, waking Mog again.

At 1 Little Fish had nightmares.

At 2 Comeback decided an encore was in order; I decided a night in the kitchen was definitely what he needed.

4.30 and Mog awake again and needing pain relief.

5.30 and time to turn Little Fish.

6.30 and Mog awake and needing her dribble drugs. And then it was time to start the day.

A new carer running late for the third visit in a row - it doesn't bode well for that point in time when her checks finally come through and she starts working rather than shadowing. And a woeful Mog unimpressed at getting dressed.

A woeful Tia with the discovery that the "service me now" spanner icon on Little Fish's Nippy was flashing merrily this morning - one trip to the hospital to get it fixed.

And one very woeful Little Fish theoretically playing the part of the "Inn-Keeper's wife" at her preschool Nativity. Much woe at the thought of sitting on the stage with the other children, much woe at the thought of spending time with the preschool staff, much woe at anything other than sitting on my lap trying to eat my jumper. It is at times like this when I question the wisdom of trying to get her integrated into mainstream life; last year for the special school Nativity she was a bouncingly cheerful Angel happy to play her part and get on with things.

More woe with the realisation that the knob from Little Fish's powerchair controls has jumped off and run away again. We retraced our steps and couldn't find it; I will have to create something (again) with pen lid and blutac.

Woeful news from the doctor's surgery - no blood test results back yet, and the sample was probably too small to test. We will know tomorrow afternoon. Which means no point in booking an appointment for tomorrow morning as any doctor we see will simply tell us to wait for the results. It's getting very close to Christmas to be thinking about making major changes, but if things stay as they are I don't see how we will be able to make the long drive to our holiday cottage on the 27th.

Side note: Becca, I like the idea of perching her precariously over a bed pan; and if she had her humour back she'd find the whole idea very very funny. And would perfect the art of kicking the filled item off the bed and up the walls. You mentioned staying in - does that mean you're out of the nursing home now? Excellent news if so! If not then do we need to be mounting a raiding party somehow to spring you? Mog has a good splattery cough she could threaten folks with if necessary.

Some cheerful news from the hospital, there's a spare ventilator and all we have to do is swing by and pick it up. We do so, bumping into a net-friend whose son has just had a minor op and is doing well. We panic a more local friend who knows Mog is ill and sees our van parked outside the hospital - and we have time to chat for a bit before her son's minor op and our drive to our next destination. I wonder what it says about us, that a quick trip to hospital becomes a social occasion?

We'd planned to skip our next activity, but since I'd forgotten to cancel it and we were driving past anyway, we called in at the hospice for a Christmas music making celebration party thing. Neither girl was overjoyed with the music - which says a fair bit about Mog's present state; normally she'd have been fascinated by the combination of violin, 'cello, and enthusiastic but amateur bells. Instead she decided to demonstrate to assorted staff and families just how well she can do being ill.

Friend and I decide to stay on after the party for a while to let the traffic die down before driving home. This proves to be a bad move. Mog's glycopyrrulate has very definitely worn off, and the journey home is interspersed with short dashes from driver's seat round the bus to passenger side sliding door to empty Mog's mouth for her, with Little Fish shouting encouragement all the while. It's tempting, but I think I am right in believing a three year old with learning disabilities should probably not be trained in suctioning her bigger sister? I know I tell people it's easy but I suspect that might be pushing it slightly?

We do however make it home eventually, where the woes begin again. The cats are deeply woeful; Little Fish has emptied a bowl of Christmas sequins and glitter over their food. It's festively sparkly but they are unappreciative.

Mog's evening woes begin in earnest and she cries the cry of the very tired, very cross, hot poorly person. And keeps it up until her medicines switch her off, several hours later.

Little Fish's woes are delayed somewhat - a minor wibble rather than a woe at the prospect of actually eating the pureed broccolli rather than using it to fingerpaint her tray - and then a major wobble at the idea of having a tube feed. And then big big woes; the new ventilator has all the same settings as the old one, it has her mask and her elephant tubing, and is on the same shelf in her room and plugged into the same socket. But it sounds and feels different to her old one. Gentler somehow; comforting to me. But deeply distressing to her, used as she is to the whoosh and rattle of the one she loves.

But eventually both girls are settled and their woes are set aside for the night. Leaving space for a small mini woe (a wee?) of my own; the takeaway shop was out of chicken dumplings. Shocking!

So now it is past ten, both girls are still asleep, one tucked up in her bed with a soggy sleeve to suck, the other slumped in an armchair with a gentle rattle at the back of her throat. And it is time for me to be horizontal somewhere without a computer.



Anonymous said...

Busy, Busy! Hope you have a better nights rest. and you can go to the cottage.

Elinor said...

Good crikey! A well-deserved sleep all round. Hope tomorrow (today?) is better.

Robyn said...

one suggestion re cottage. You can meet me somewhere and I will travel with you.. Either i can drive or be suction person. An option we can explore next week if


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