Spent the afternoon doing not much. Reading, puzzles, writing. I was hoisted onto chair just before supper, Sian and Julio arrived. Very nice orange juice, cottage cheese salad and the usual cheeses and biscuits. I needed some help choosing my menu for the next day as corned beef and turkey featured both for lunch and supper, it was a bit of an odd menu as for supper there was turkey cottage pie (description: minced turkey breast with mash potato and diced carrot in a pie with gravy) then the only carb choice was mash potato and the only veg choice was carrots! I will leave you in suspense about what I chose until later!
Sian gave me a lovely present of a light woolly scarf/ shawl for my shoulders as it’s quite cold downstairs. She’d had an expensive wander round Cribbs while she was waiting for one of our company mobiles to be looked at/ repaired at the Apple shop (quicker and cheaper than sending it off). As well as getting my present at Fat Face, she also had a foray into M&S.
Back to bed and more chat.
The lady in the bed next to me has gone, as has the new lady in the bed diagonally opposite. She had had plasma exchange a little while ago, and was in overnight after a relapse. New lady next to me, but haven’t spoken to her yet. Curtain shut again.
Watched tv for a while then settled for night. My sugars had got up to 26 again, so insulin at 22:30 and bloods again at midnight, when they’d gone down a bit.
Thursday 3rd
Had a reasonable night’s sleep. Woke up several times, had some water and able to go back to sleep more or less straight away. The extra blanket may have something to do with it, and also the fact that Peter my night nurse again took care in positioning me – at the right angle on my side: pillow at my back stopping me rolling back flat, another pillow at my front stopping me squashing up to the side bar, my right leg over my left with another pillow between my knees. That’s a lot of pillows!
Woke properly at 6:30. Sugars 10.2. Some meds. Caught up with emails etc., then breakfast arrived. Different lady serving it and after I’d asked for the usual, I was asked if I wanted a bread roll. I knew nothing about the availability of bread rolls before – nobody’s mentioned them. That explains the silver paper bundle on top of the trolley. I might give it a try tomorrow.
The nice Chinese man that appears every now and then came and took bloods for the clotting test.
Bed bath, (I think that “I think I may have opened my bowels” is one of the most embarrassing things to say – and yes, I had) hoisted into chair and whisked off to rehab gym by physio and occupational physio. Why are physios so “jolly hockey sticks”? They were even called Jenny and Pippa! And so positive and enthusiastic, which I suppose is part of the job description!
Very tiring session – but I STOOD UP!!! Admittedly, it was by using my arms to push down on the table in front of me, and with someone either side, but it was standing. I even managed to pat the table so not using that arm momentarily. I have been given a load of exercises to do, including “bottom walking” (I think it’s the technical them for shuffling).
I’ve also been told I can start wearing clothes again (well t shirt and leggings) and shoes or slippers with backs to support the legs and ankles. Jenny said that one man, when told this, looked horrified and said “I’m not wearing Lycra!”
I feel so pleased with myself. The PEX has obviously made a huge difference. Still no feeling, but got some strength back and there are messages getting from the brain to the muscles.
I don’t necessarily have to be hoisted in and out of bed now, as there is a swivel stand. Think non-motorised segway. You haul yourself up (with help if necessary)’ to a standing position, then the nurses swivel it around and you sit on the bed. They are still going to have to lift my feet and legs up but what a difference! They will use the hoist if necessary and I’m too tired.
Back in the ward and it’s freezing – they open the windows for a while to get some fresh air in. It was very quiet. Just Donna (lady opposite who has made amazing progress) she is really happy because she was told that she can go home on Saturday, which is her son’s 11th birthday and up to last week it looked impossible that she’d be well enough to go home. I don’t know where next door lady is, and the 4th bed is still empty at the moment.
Then Jenny came to take Donna to gym to practise stairs, so I was only one left. Ruth the ward manager and the person who admitted me when I arrived came to see me and we talked about my progress. She was a bit cross that I have a reservoir catheter instead of a normal one as they are a lot more expensive but I explained about the low blood pressure, having to drink lots and that they had actually been recording output.
Holly the very new nursing auxiliary made me a cup of tea and admired Sian’s daffodils.
Phlebotomist came to take more blood samples. Obs are good – blood pressure almost ok at 98 over 54 and sugars 10.3
Had lunch – if you remember, I mentioned odd menu choice earlier. I had orange juice, corned beef and baked bean hash with carrots and cauli followed by ice cream – very nice!
New lady in bed diagonally opposite who has arrived on foot and remains fully dressed sitting on bed.
Waited for some time to be put back into bed. As physios said that I could use the stand rather than the hoist, we had a go. This was very funny (but not at the time, which was a bit tricky) I hauled myself up on the stand, (think segway without the motor) and they spun it around so that my back was to the bed. Remember I have no feeling in legs or bottom. Unfortunately, because I am short, and because the bed had two mattresses (normal and pressure) my bottom wasn’t high enough. The two nursing auxiliaries had a hard job heaving me up a bit and on to bed, whilst I was hanging on for dear life. We came to the conclusion that I can use the stand for getting out but will use hoist to get back in.
Blood man arrived to take more bloods, then Dr Leitte arrived, tested my legs and talked about what happens next. Bit disappointed – my bloods aren’t as good as they should be, but marginal. They will repeat bloods later. Line is coming out later (this involves the wound being pressed on for a while, then being flat for an hour. I will probably be here for at least another day, and depending on how many antibodies are still there I may need some more PEX in a week or so, again depending on the antibodies.
I may need some more plasma today (will have IV) depending on blood tests.
The lady in the next bed has been moved somewhere else, so had the deep clean people in again. They are very thorough, which is reassuring!
Then I just avoided an embarrassing situation. Put the tv on, and was about to phone to complain again when I realised I hadn’t actually plugged my headphones in!
Pre-dinner sugars up to 21.
Got into chair via the stand, which went well.
Nurse brought meds. Which included the new med Mycophenolate, which will over the next 3-6 months replace the steroids – steroids will be reduced and the M increased.
Supper was also nice, but I had turkey cottage pie which naturally contained carrots and was covered with creamed potato. Only choice of carbs was …… Creamed potatoes. Only choice of veg was…….carrots! I have had enough of cheese and biscuits, so splashed out and had the dessert marked with a heart …. Peaches in light syrup. Goodness knows what my sugars will be like, but I don’t care! Back to being good tomorrow.
Julio arrived and we went for our usual promenade to Pret, where I had a cup of tea and half a plain (as opposed to choc or almond) croissant. I then wheeled myself round to the counter and had a take away Earl Grey to bring up to the ward. Catheters have their uses!
That’s up to date for now. I think I may be having the line out, I may be having plasma, - exciting times!
Love
me
Love
me
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