Day +138(Thurs) part2
What a heading eh? But I wanted to keep you updated properly, so here we are on Thus. night now. Ella is fast asleep, at the moment, Sally has gone for an early sleep ( she’ll take over at 4.00am) and I am waiting to meet Rachel….Ella’s nurse for tonight. I’ve just done a quick change act, in the cubicle, into my pj’s before she appears….didn’t want to frighten her. If you remember we can’t fit into the bathroom at night because the chair is in there!!
Ella’s day has been a real mixture of ups and downs. We had a procession to the ‘heart d’part’ at 9.00am….on the bouncy castle….and then when we got back the pain team came to change over the drugs. Things slipped downhill from then as it became apparent that the new idea didn’t suit Ella and she was still in pain. They came back and a new idea was started and that seems to have done the trick. The morphine is still stopped completely but has been taken over by fentanyl this time.
The other major change of course is that Ella has been allowed to have LITTLE tastes of drinks or food. As long as it can be aspirated back through her tube she can taste it. Soooo today she has had 2 tspns of mushroom soup, 3 tspns of tomato soup, 4 tspns of jelly and an assortment of sips of juice. Oh and she sucked a crisp earlier on! It is a real delight to see her little face light up when she isn’t denied a taste. We are going to have to keep the reigns on tightly, but she has realised herself, today, that it is a case of tiny steps!
Sally and I have had a strange day really. Most of it has been spent eating or walking around. There isn’t room in here to swing anything, let alone a cat, so you have to get out for a wander quite often. We have got used to the space back ‘home’ in Manchester, where at least we could revert to our cottage industries if Ella was asleep. Here, however, even the sacred ‘red box’ of goodies is in the bathroom! Sally did have a walk to Tesco earlier this afternoon for essential supplies and for goodies to fit into our posh new shelf in our posh new kitchen. As you can imagine, she staggered back with about 6 bags….it was a lot further on the way back!
Sally had a lovely call today from Kirsty and ‘the Manchester angels.’ She and all the team up there are so special to Ella and of course to us. They are going to try to get down to see her, maybe next week. Watch out Birmingham!! I know that Dr Rob (Wynn) has been asking about her every day and I feel that he would be encouraged if he could see her. There is a special bond between them, even if Ella did only speak in sign language to him, most of the time.
Something really nice happened to me today as well, I went to Church. There is a proper Church here in the hospital, on our floor. You know in some stately houses there is often a chapel? Well here there is one too, which is very traditional to look at, with pews and stained glass. It’s quite amazing, and is shared by all the faiths at some point in the week.
The builders who are working on this unit are on a tight schedule to finish by tomorrow afternoon. In fact they have been working through the night, for the last few. We have been told this is their second deadline….so they have to get their skates on for the big move on Sunday. From what we can see from our room it looks very nice indeed….bright and modern….and nurse Natalie has requested that Ella’s cubicle should have a bathroom, so we’ll have to see. Fingers and toes crossed eh?
Well, it’s 11.15pm and I’m going to finish. Ella has been awake a couple of times for drinks and things, but I am hoping that she will settle now and then I can switch the night light down a little more and have a snooze myself.
Night night, lots of love and thanks for all your prayers and loving support.
Ella, Sally and Annette.xxx