She came back afterwards, we closed the privacy curtain, and got stuck in. I knitted a few stitches while she watched, then she did some while I supervised and watched. Got to end of row, so I did a purl row and then I went and sat on the loo while she did a couple of rows. Success! I offered the bit we’d done so that she could do some in her break, but she didn’t want to do that. Came out of the bathroom to find she’d already put it all away in my knitting bag.
When I got undressed and ready for bed, we noticed that my ankles were really swollen. Worse than ever before, so I need to do more raising feet tomorrow.
Woken up for morning sugars at 6.30- again, I was technically hypo as the sugars were 3.6. I was asked if I felt OK, so I said yes, then realised afterwards that this was a bit of a silly thing to have said as I was half asleep and lying down! Bit of a panic as no wee in the night bag, and they were worried about my kidney output, but on checking, it transpired that I had lain on my leg bag during the night and done something to the valve. Luckily, the wee doesn’t seem to have backed up and overfilled the bladder and affected the kidney, so all well and draining properly.
Breakfast and meds. Because of the hypo, I was concerned about having my increased insulin dose, especially as it arrived before breakfast, but the nurse had checked that it was ok, so I stabbed myself and washed loads of pills down. Breakfast arrived – Bran Flakes again, and a piece of brown and a piece of white toast.
By this time, I was feeling not too brilliant and had really bad pins and needles as well as a very tight chest, so dozed until I was got up at 10.30.
It was another very busy day on the ward. Mb left! She has gone to a specialist care home, but looked very confused when being wheeled out strapped into a wheelchair.
Then we had a load of people coming round doing an “audit”. It was to do with cleaning and they were very thorough by what I could see. The domestic who has been here for years, Caroline, knew a couple of them, and so wasn’t particularly bothered as she was confident that she does a good job (she does) and one of the auditors had been a colleague of hers from long ago. The auditors also looked at marks and bumps on the walls to see if they posed a hygiene risk.
I left a message for Sharon to give Juli a ring about the care situation (this will be an ongoing saga during today). Then another nurse came and left me with two bags of continence supplies (leg and night bags) for when I go home so that should they magically find carers and discharge me, I’ve already got them ready. Also the contact numbers for where to order more. They have also sent a referral to the district nurse for when I come home. So, as far as the hospital are concerned, I’m set to go home and they want to get rid of me!
There was no sign of a Dr this morning, so I asked the nurse about the wee sample request from Dr Lennox and GWH, and she said that that was a bit confusing as I was here and I’d been asked to drop it in to GWH. They send samples for testing (blood or wee) to Bath and so Sandra the ward clerk was going to ring Oxford and ask if it was ok if it went to Bath or whether it had to go to GWH, and if the latter, was it ok to post it (wee only lasts so long).
Pre lunch sugars 10.5. Nice lunch of chicken and ham pie, potatoes and cabbage and cheese and biscuits. Coffee.
Was going to ask to lie on bed for a while for the ankles but not sure when my phsyio session was, so stuck my legs out and did some ankle and toe exercises. Started doing some more research into NMO, and the charity set up to raise funds for the research and support of people with NMO. Again, I am feeling very lucky as I have it comparatively easy compared with others. So lucky not to have my sight affected. I’m not going to be able to match the fundraising others do, but will explore what I can do to help in my own little way. I have bought a t shirt, so that’s a start!
Then Alice came and asked what I’d like to concentrate on in my physio session – standing/walking/balance or cycling. I said that I was having a bad day legs and walking wise, and could I do cycling, please? No problem, so I got wheeled into the rehab room and strapped to the machine (sounds like a potential for either comedy or torture with machine going ever faster!). Because of the leg issues, only got to use first gear, but I did start cycling straight away.
Had a lovely time and actually enjoyed it. There was a gentleman standing at the bench playing solitaire (the sort with the pegs and holes, not the card one) so we talked about that. Alice hadn’t played it. He left at the end of his session, and I multi tasked, cycling and playing solitaire! I was rubbish as not played for years – the best I could do was 4 pegs all over the place. We then talked about all sorts of things – magistrating, dementia and movement, and babies (physios coming back from maternity leave and another will be going, and Beccy on phone trying to find cover for next maternity leave). In all, I did 6 miles in 40 minutes. That is further than from home to Bassett! I have asked about whether it was worth getting a pedal/cycle machine to use at home. Alice said that it wasn’t necessary as there were still lots of exercises I can do sitting in my chair (using the resistance band and possibly weights) but if I felt that it was helpful, then it would be good. I have since researched and found a couple that you can change the resistance on, so may think about it.
Phone call from Julio who has been raising hell with the Trust about wasting taxpayers’ money. Apparently it cost £1200 a day to have me here. Sharon being really helpful and doing what she can. Julio contacted Bev Tydeman’s agency and a lady called Tracey will be getting back to us. Tracey had already called Sharon (are you keeping up?!) and confirmed they would also need to do a home visit to see what needed and what I can do. Various discussions between Julio, me, Sharon and Tracey (Bird's of a Feather!) about what I actually need and when. Problem is that there are no carers available at the moment, and that if we say that we don’t need so much, then do we have to pay for it. Still down to availability whether private or hospital carers.
There is an NMO thing in Birmingham in May that I want to go to, which will involve an overnight stay, so I may need to book that soon when we get the details. Then my next NMO out patient appointment is in August, so the diary is getting full up!
Sharon called in to say that she needed to speak to some more people. Tracey from Tydeman's say that the earliest they could do a home visit would be Tuesday after bank holiday, and don’t know when they could schedule someone after that, so it looks like I’m in for a bit longer. We had a discussion about what needed doing when, budgets, carer availability and life generally.
Life is getting more complicated. I’m bed blocking, but I also have a hospital appointment for a scan for the kidney on Tuesday as well as the Tydeman visit. I don’t know if the hospital transport will take me to GWH for a private insurance scan. It seems silly for Julio to come all the way here, then Swindon, then home, then here (or variation on that) perhaps they could take me home, then collect me again later.
So, not sure what happens next. Juli is battling on, but as his arguments are based on logic and waste of taxpayers’ money, I don’t know how successful we’ll be. There will be no point in a Pyrrhic victory if it means losing funding later on when the responsibility transfers to the local authority from the Health Trust (can’t miss a stage out).
Pre supper sugars quite high (18.7, but the nice hot drink man gave me 4 biscuits with my mid afternoon coffee as I said I’d better not have a piece of fruit cake, which was also on offer). Supper was leek and pot soup, then nice ham salad. No idea what I have for pudding, as it hasn’t arrived yet. I suspect it’s a piece of fruit as I had c&b for lunch.
It was a nice crunchy apple. My bowels and I waited for Juli (I think they are jealous and demand my attention when he is due/when he arrives!).
He arrived as Ellen was here, and he “offloaded” to her and me about the inconsistencies and illogicality and bureaucracy of the NHS. Ellen explained what the unit had been like before with a specialist stroke nurse as ward manager, who visited the potential rehab patients in their acute hospitals and assessed who would be suitable candidates for the unit. There was intensive physio, speech therapy, singing, craft, all sorts of rehab activities and people usually stayed between a week and a fortnight before being discharged with proper care packages where necessary. She also mentioned that the GWH Trust was no longer going to be in charge after July as they had either lost the contract or hadn’t bid for it. So, even with the shortcomings in the unit that she saw at the moment compared with what it had been before, I think I am probably lucky to have been here before July.
We then went to get our drink, and went and sat and talked through Julio’s plans for getting me home. This is basically a re-run of getting me out of Jupiter Ward at GWH – even with the same lady at PALS (patient liaison service), who remembered him from before. Not sure if this is a good or bad thing. He wants me home on Friday.
We also talked about the NMO thing next month, and the need to stay overnight. I will need a wheelchair accessible room, which will be a new experience for me. We like Campaniles (we stay in them a lot when we go away as we like their dinner hors d'oeuvres - and dessert buffets!) and there is one nearby. I need to research disabled rooms.
Back to room, Juli took the continence supplies and my dirty clothes. Unfortunately, didn’t bring any clean ones, so a bit limited tomorrow. Restocked my biscuit stash (as this seems to be a regular feature if my updates, I’d like to point out that my little plastic container doesn’t hold that many).
Rang bell, and went to loo. More chat with Ellen. Told her about the very moving tribute to the Hillsborough victims on Radio 5 last night about midnight and suggested that her partner may want to iPlayer it. She said that she thought he’d heard it as he’s a long distance trucker and listens to the radio a lot.
So, that’s it so far today, I’ll let you know if there is another secret knitting session tonight!
I’m not sure how I feel about going home without the care package being sorted out – not because I don’t think that I will be cared for well by whoever (Sian, Julio, NHS appointed agency carers or our own private careers), but because I don’t know what knock on effects any arrangements we make that is not NHS care plan being implemented will have.
But, the escape plan is being hatched.
Goodnight!
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