A rollercoaster day.... one of many we have already had and one of many we are bound to have in the future. Started with poor Al being told Emma was being evicted from her room and being out in the ward of 4 beds. The reason being children were being admitted with infections and they needed to be isolated. Absolutely fair enough but Al will now have to sleep in a chair rather than the pull down bed which he has been on. He hasn't had much sleep this last week but will get even less tonight. He has been told if the bed next to Emma isn't filled tonight he can kip in it. That would be funny to see the 2 of them in the children sized beds side by side!
Emma is now on steroids, something which will in time be decreased. In the meantime though she has great side effects- wants to eat! but also bad ones- very bad moods. This can be very hard for us to listen to but the nurses assure us they see it in most of the new transplant patients and it won't last. We did laugh though when the carol singers turned up and Emma very rudely told them to "Be quiet!" from behind her curtain!
Her bloods are being monitored very closely so that the team of doctors can balance her drugs perfectly. Its very stressful when you are told about levels being 'up' and levels being 'down'. You just have to have complete faith in the team as they deal with this every day. She is still on a drip at night as her body gets used to my kidney inside her. They are happy with her but are certainly having to 'tweek' things just as they had warned us they would.
Emma did walk today for the first time since the operation but she didn't want a photo taken. Maybe tomorrow. We don't push her, she knows what she wants!
Meggie and Greg are having another day at home and will be coming on Wednesday now. I don't sleep well at night at all so really struggle in the mornings. we are also moving accomodation tomorrow as the patient hotel shuts for Christmas. GRRRRRRRRRR So we are heading to the 'Italian Wing'. How posh does that sound?!?!? Am sure it will be anything but, but who cares!!
Coz and Jim visited today which was fab. I think Coz and Mel have obviously been to the same wheelchair driving school!! I did laugh though which did hurt my side but was nice to do for a change!
Am now planning to take my bandages off. Oh my goodness!! Don't worry Grandpa still here to pick me up if I faint! I really don't do scabs, blood, oozy bits. Changing subject now!!
2 more things.... (sorry I am so boring)... in case you missed it do check out the c-beebies pantomime on i-player. My beautiful Meg and Greg are seen twice, Grandpa once and the backs of our heads throughout! And we are also in this months 'She' magazine, the reporter was following one of the nurses when we were on the ward in October. Fab photo of Emma in it and a bit about me.
Right, enough waffling and bandage removing avoiding.... hopefully back tomorrow.
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'i see the worry of responsibility etched across her face.............' not sure about you but my transplant worry line is still there..
ReplyDeleteGlad that Emma got up and walking, did she twirl the drain bag like we had planned? Wonder what Emma would have said if the accordian man had turned up... maybe u should call him, think i have his number somewhere..
Am sorry that things aren;t running as smoothly as you would like, but , what can i say, they are looking after her, and you must look after yourself too.
hugest hugs, if allowed.
Erika xxxx
Ok Florida calling again and we are grumbling that it falls to 40 at night and struggles to 65 in day.... everyone say AHHHHH.
ReplyDeleteStill last night watched cbeebs panto (well no strictley now) Thanks to whoever put in the timings as we were well prepared. What we want to know is the pulling power of Beedens getting the royal box smack in the middle. Would have known them anywhere even from the back, enjoyed the panto too. Off to play cribbage now,,,, its all go in retirement land. Keep up all the good work both of you and Kate two of my friends over here have had kidneys removed and say keep doing the walking even when you dont want too they both swear by it to aid recovery. They are husband and wife and now attend specialist appointments at the same time how about that for togetherness
Love Sue and Dave
Hi, have just read your blog, so sorry about the text!! Sorry to hear that your day's not been the best, but it does mean one thing, things can only get better and I sincerely hope they do, for you all, very soon.(check out the grammer! :) )
ReplyDeleteMum and Dad keep asking after you all and send their love to you. John also asked me to send on his regards to you!
Your constantly in my thoughts and reading your blog, it just oozes with love and admiration you all have for each other as a family and that will carry you through this trying time.
Take care friend.
As always love to you all.
Ali xx
Well I am relieved to know that I am not the only novice in the camp!Am still chuckling about our trip down in the lift!!Keep the faith lovely friend-we are all thinking of you!Love Mel xx
ReplyDeleteHI
ReplyDeleteSorry to hear that you are on a rollercoaster still. Hang on tight you are all doing so well in difficult circumstances.
Lovely to hear Emma on her feet and walking anbout, little steps = excellant progress.
Glad to hear you have lots of peopel routing for you and thank you for continually finding the time to update the blog - it is a lovely account and I am loving the updates.
Keep strong, love to you all
x x x
Sorry that the road to complete recovery is a bit rocky or indeed mountainous for you both. You are both being so brave. Sad that the drugs are making Emma moody as she is usually so cheerful - at least when I see her. Feel guilty when all I keep moaning about is the snow making travelling difficult!!
ReplyDeleteNo doubt you'll find lots t laugh about once this is behind you. Hope your new accomodation lives up to expectations.
Love Jill
Hi K
ReplyDeleteIt's great that you are able to update everyone, even though things are so up and down. Hope things start to settle soon, you certainly have the best team around you - both the medical staff, and your lovely family (even if the grown-ups are squashed into tiny, tiny beds. . .).
Oodles of love: hope to catch up daily, but off up to Yorkshire tomorrow for a few days.
Hope the 'Italian Wing' is OK! Sounds bizarre.
Lots and lots of love
Luce xxxxx
Hello London hello London Florida calling. Just been looking belatedly at loads of photos Erika gave me on a memory stick and there is a lovely one at Holly's birthday party of all the girls diving head first into a basket of mini chocolate bars except of course Emma who has theeeeemost sad face watching them. So pleased she can now eat more of what she likes. Is chocolate on her list of can haves yet. Do remind her of the party and tell her it all comes out right in the end. Enjoy Christmas and eveything else ahead
ReplyDeleteLove Sue and Dave
Hello Katy and Emma.
ReplyDeleteAm loving keeping intouch via your Blog, you are both fab and sooooo famous. I had an early Christmas present which is an annual subscription to She! so yes I was sitting with my cup of tea when amazingly there were the famous Beedens! Such a great photo Emma. (you are giving the Beckhams a run for their money!)
Erika may have already told you but the Next VIP emails have arrived! which one of us will reach the top of Melvin's leader board this year??
Love to all Joxx
Harumph, would have told her if i had had one!
ReplyDeleteno chance of me being visited by Melvin, am so gutted.... will have to sneak onto Katy emails and grab her vip slot......
I have my time slot too!!! So exciting. Katy, we finally watched the panto, brilliant to see you all in the front row - Ella loved it especially Justin. Hope things start to settle down soon for you both - I know they will. Lots of love to you all, Kathryn xxxx
ReplyDeleteHi Katy, me again! Just wanted to let you know - it just wasn't the same without our last minute phone calls - I had no-one to panic with! Come home soon, Kathryn xxxxxxx
ReplyDeleteHi all,
ReplyDeleteGood to keep reading all that you are up to.
Hope the move to the new 'Italian ward' goes smoothly.
Much love Kathy and Chaley