Sadly Friday night was not repeated. I thought I'd had three hours straight Saturday night but but it was 2 hours plus an automatic loss of hour due to British Summer Time. Side note: how can it now be BST when they're still predicting snow later this week? Ridiculous.
And last night? Last night Dad and I spent four hours assembling the flattest of flat packs (you know it's not going to be a simple job when there are 20 different kinds of screws, and the flat bits are labelled not just A-Z but then move to AA, AB, AC, etc right the way through to AM), creating something rather fabulous for Little Fish, but not finishing until nearly midnight. Photos to follow when she's had time to see it for herself.
Meanwhile Mog decided to keep life interesting, alarming and needing repositioning at 9.30, 11.30, 1.20, 2.30, 3.20, 4.00, 4.20, 4.30-5.12 (oops slept through that one), 6.10, and 6.50. And Little Fish decided to reflux somewhere around 4AM, obviously keen to ensure she wasn't ignored overnight. One sheet with nice neat coffee grounds on it, one stomach full of air; deflated, she then slept through til 8. Now why couldn't she have done the sleeping late bit over the weekend?
Photos for Tina - sorry I didn't get them to you before bedtime but there were one or two things grabbing my attention!and with the chin strapFull Face mask photos not here yet as still waiting for replacement full face mask - come on, Mr Postman.
It's not as if I'm not used to being awake at nights. Goldie used to have a monthly sleep cycle - awake all day and night at the top of the cycle, and asleep for a week at the bottom. Somewhere in the middle a happy medium. But even on her most awakiest of nights she didn't actually need me. She'd lie in bed, fizzing over with the joy of being alive, waving her hands in front of her face and ScrEeEEEEeeeeEEEEEeeeeeeEEEEEEEEEching, and rocking the bed so that we had to move it into the middle of the room. And, barring the odd occasion when she'd call for me*, most of the time she'd just entertain herself. So I'd shut every door between her and me, stick a pillow over my head, and be thankful that she was happy. And try hard not to care about how noisy happy was. This is less fun.
And now excuse me, bed is calling.
*My favourite night time memory; being summonsed in our old house, which meant staggering down a flight of wooden steps from my room to hers, not pleasant in the depths of winter and never fun at 4AM. I walked into her room and asked her what she wanted. It's possible I was not terribly polite. And she grabbed my hands from her bed, and lifted her head up to call "you put your left hand in, your left hand out, OOOOooohhhhh the Hokey Cokey!" Hard to be cross about that really.
Some possible help with the repositioning could be had from a mattress that had some movement in it. The absolute Gold Standard is the Hill-Rom Duo 2. It's the one I always use in hospital, hire on holiday and am working towards getting funding to have one at home.
In terms of comfort and general nighttime needs, Mog and I have really really a LOT in common at the moment. Lying on my side, it feels like my hip is cutting through the (more than generous) layer of fat, atrophied muscle and skin. I can manage 2 or 3 hours, well propped with pillows, then I absolutely must move. Not even morphine makes lying on that hip tolerable for much longer. Nothing does, in fact, except for that mattress. On it, I have slept full nights comfortable on my back, spent 4 and 6 hours at a time comfy on my side.
They're not all that pricey to rent, short term - assuming Mog has a fullsized bed now I can't encourage you enough to give it a go.
You mentioned a week or so ago that it had been suggested ‘not appropriate’ to see if BiPAP etc. would help Mog at night... I've been thinking and thinking and I feel quite strongly that whoever said that may well have been prejudiced by an assumption that Mog does not have a good life generally, that she might be being discriminated against by someone who is biased against people with profound impairments and high-level support needs. I have done lots and lots of peer advocacy stuff for a friend my age with roughly the same impairments as Mog, and wanted to reiterate that I would really like to offer my support and also just to remind you - and especially remind Mog - that the whole of the disabled people's movement in the UK are at her disposal, should she need our collective help. There's an increasingly strong sentiment that young'uns need to know that they are part of this flock as well as their many home and local community based ones. She might not realise it, but she is most definitely One Of Us.
aww, what a sweet memory...
I'm sorry you're having such long nights. Praying...
Yeah, that is such a sweet memory of Goldie! She did haf=ve her own sense of time.
I agree with the above poster you need a better mattress or they need to get help in during the night. Bi PAP would keep her airway open! A better positioning and pressure relief mattress is indeed needed! We had to fight like heck for both for /Alicia when she needed them! You go girl!
You need sleep and so does Mog.
As for assemble it yourself furniture ---UGH!!!! Beautiful when assembled but such a pain!
lol about Goldie's jumping the bed around! Isaac does that TOO! I was amazed the first time I went to his room, and the bed was moved WAY out of it's usual spot by his simply kicking! Amazing the strength he has in those little legs and back. People just have no idea!
So sorry you are not getting good rest. I can sympathize right now (Doug's working nights while I am out of commission with my back, so my nights are very restless, too)
Will be praying for Mog - the breathing issue is definitely not to be ignored. Will be praying for wisdom for you to know how to proceed with it all. (sometimes that seems to me to be the hardest thing - decided what route to try first)
Hoping LF felt better in the morning, and that the reflux won't be repeated tonight.
Hugs to you all,
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