Day + 55
Today began early with Ella waking about 7.30am. Sally and I had a slower start with our usual cuppa, and then we got the wheels in motion, so to speak. Ella had a comfortable night. She had some waking times, but on the whole she slept quite well.
Medicines began really early, in order to fit them all in, within the day. When Dr Wynn came this morning he said Ella is improving slowly, after a difficult transplant. The medication has changed again today to include a drug which needs to be given three times a week, beginning today. However, it goes over 12hrs in her line and needs tablets three times a day, plus line flushes, to push it through. It began today, so unfortunately for our brave little angel it has been a constant flow of medicines, both IV and oral, and no time off her lines. The morning went quite quickly, but by this afternoon tiredness and frustration kicked in. It’s not surprising is it?
Ian arrived quite early too, with enormous bags of clean washing (big thanks Ian) and three more ‘pets’. What this time? A pony, a cat and a duck. The “Twelve Days Of Christmas” has nothing on us!
Whilst Mummy was out, stocking up on Ella type foods, Ella enjoyed her bed bath, especially the lovely strawberries and cream body lotion she had on afterwards. Sulynn, our ‘daily’ on the ward, was in here when Ella and I were getting her ready and she kept coming over to sniff it!
Sally landed back with lots of bags full of goodies, and we had strict orders from Ella to speak to the dietician about whether or not she is allowed them. Good news for Ella because most of them are. They are all a variation on a theme, but at least they look a little different to Ella. There have been different veg added in and cornflakes too!
We all enjoyed a visit from Martin this afternoon. It was good to chat, but as I have already told you, Ella was tired and not really in the mood to join in. That didn’t stop us trying though, and out came the Wii. Martin promised us he had hardly played….umm….it didn’t take long before he had wiped me out on the Mario Cart. Sally took over from me and things soon looked up for the girls!!!! Mind you, we three grown ups were interrupted by Dr Arkwright and Dr Wynn, who came in to introduce a new consultant immunologist, who is moving up from Great Ormond St!!! Slightly embarrassing don’t you think? The photo above shows you Sally and Martin locking horns……it was only when they had finished their last race, at the bottom of the score board, that Martin realised he had been trying to race Sally’s car, thinking it was his!! Talk about men drivers….
(Thanks Martin for taking the latest washing home, and thanks Reg for washing it.)
Ella decided that she would like to try some chips for tea. I knew that Auntie Rachael had made some over the weekend, and now it was my turn to try my hand. Half an hour later I emerged with a few ‘oven chips’, hoping against hope that they would live up to their predecessors. They seemed to, and they even spurred Sally on to try making crisps….salt and vinegar crisps even! We know Jamie Oliver can do it, but we both agreed that even he would be pushed to manage crisps using only a potato peeler and a wobbly oven. Anyway, the taste was ok. Enough said.
Damian and Stu arrived about 6.00pm for a visit, which Ella enjoyed of course. It gave Damian time to catch up on Dr Wynn’s latest treatments and Sally and I time to have tea in the restaurant, together.
It’s now getting quite dark, and we three have been missing our dose of ‘Corrie. Ella is asleep, Sally has been painting and I’ve been practising my ‘River Deep, Mountain High”. No prizes for guessing who Reg and I are going to see on Friday. Can’t wait…….
Well we’ll finish now. The fairies are twinkling and Ella’s ‘glow in the dark’ bracelet is showing bright orange under the sheet. ( It was a present from Muriel for being a brave girl and swallowing her tablets today).
Night night to everyone and thank you for all your prayers and loving support.
Ella, Sally and Annette.xxx
PS Special best wishes and good luck to all at St John’s during your Ofsted days
PPS Special best wishes as well to everyone at OLOL and lots of love to Grace, Ella is missing you and all her friends very much. See you soon.x
Today began early with Ella waking about 7.30am. Sally and I had a slower start with our usual cuppa, and then we got the wheels in motion, so to speak. Ella had a comfortable night. She had some waking times, but on the whole she slept quite well.
Medicines began really early, in order to fit them all in, within the day. When Dr Wynn came this morning he said Ella is improving slowly, after a difficult transplant. The medication has changed again today to include a drug which needs to be given three times a week, beginning today. However, it goes over 12hrs in her line and needs tablets three times a day, plus line flushes, to push it through. It began today, so unfortunately for our brave little angel it has been a constant flow of medicines, both IV and oral, and no time off her lines. The morning went quite quickly, but by this afternoon tiredness and frustration kicked in. It’s not surprising is it?
Ian arrived quite early too, with enormous bags of clean washing (big thanks Ian) and three more ‘pets’. What this time? A pony, a cat and a duck. The “Twelve Days Of Christmas” has nothing on us!
Whilst Mummy was out, stocking up on Ella type foods, Ella enjoyed her bed bath, especially the lovely strawberries and cream body lotion she had on afterwards. Sulynn, our ‘daily’ on the ward, was in here when Ella and I were getting her ready and she kept coming over to sniff it!
Sally landed back with lots of bags full of goodies, and we had strict orders from Ella to speak to the dietician about whether or not she is allowed them. Good news for Ella because most of them are. They are all a variation on a theme, but at least they look a little different to Ella. There have been different veg added in and cornflakes too!
We all enjoyed a visit from Martin this afternoon. It was good to chat, but as I have already told you, Ella was tired and not really in the mood to join in. That didn’t stop us trying though, and out came the Wii. Martin promised us he had hardly played….umm….it didn’t take long before he had wiped me out on the Mario Cart. Sally took over from me and things soon looked up for the girls!!!! Mind you, we three grown ups were interrupted by Dr Arkwright and Dr Wynn, who came in to introduce a new consultant immunologist, who is moving up from Great Ormond St!!! Slightly embarrassing don’t you think? The photo above shows you Sally and Martin locking horns……it was only when they had finished their last race, at the bottom of the score board, that Martin realised he had been trying to race Sally’s car, thinking it was his!! Talk about men drivers….
(Thanks Martin for taking the latest washing home, and thanks Reg for washing it.)
Ella decided that she would like to try some chips for tea. I knew that Auntie Rachael had made some over the weekend, and now it was my turn to try my hand. Half an hour later I emerged with a few ‘oven chips’, hoping against hope that they would live up to their predecessors. They seemed to, and they even spurred Sally on to try making crisps….salt and vinegar crisps even! We know Jamie Oliver can do it, but we both agreed that even he would be pushed to manage crisps using only a potato peeler and a wobbly oven. Anyway, the taste was ok. Enough said.
Damian and Stu arrived about 6.00pm for a visit, which Ella enjoyed of course. It gave Damian time to catch up on Dr Wynn’s latest treatments and Sally and I time to have tea in the restaurant, together.
It’s now getting quite dark, and we three have been missing our dose of ‘Corrie. Ella is asleep, Sally has been painting and I’ve been practising my ‘River Deep, Mountain High”. No prizes for guessing who Reg and I are going to see on Friday. Can’t wait…….
Well we’ll finish now. The fairies are twinkling and Ella’s ‘glow in the dark’ bracelet is showing bright orange under the sheet. ( It was a present from Muriel for being a brave girl and swallowing her tablets today).
Night night to everyone and thank you for all your prayers and loving support.
Ella, Sally and Annette.xxx
PS Special best wishes and good luck to all at St John’s during your Ofsted days
PPS Special best wishes as well to everyone at OLOL and lots of love to Grace, Ella is missing you and all her friends very much. See you soon.x
Hello! So glad to hear that things are improving, we talk and think about you often. Ella, we are going to send you a lovely easter craft ideas book (to keep mummy and nanny busy!) will give it to auntie Rachael. We hope you are all ok hope to see you soon, lots of love Clare, Libby, Hannah and Gracexxxxxxxxxxxxxxxxxxxxxxxxx
ReplyDeletehi its good to hear your getting a little better day by day and your still managing your lovley smile . Alex says your doing really well considering your spending so much time there like she did! . Alex i think was the only child that loved nhs food . love to you all xxx
ReplyDeleteHi there little Ella Bella, we are all thinking about you here in the Mac household and the girls are keen to know how you are so no doubt I'll be kicked off in a moment. I have snook in the lounge with the laptop while they're eating their tea. Isobel is actually choking on hers, I didn't realise my cooking was that bad! Ella I am so pleased to see you are having some much better days and you can eat some nice little bits of food, I bet mummy enjoys buying you some tasty treats, it's good to know you can eat some little bits when you fancy. Your're still the no.1 bravest girl I know Ella, keep getting better and better. Take care everyone.
ReplyDeleteLots of love to you all!
Jules, Emily and Izzy
xxxx xxxxx xxxx