Monday 20th May - A Much Better Day

My granny came to sit with me last night, she took over from my daddy at one o clock in the morning so he could go and have some rest, my mummy and daddy come and see me at seven o clock in the morning every day and stay until very late at night and the nurses throw them out! Because i had been so poorly during the day, my granny was very determined to come and sit with me, she left my Grumpy in charge of Ben (I am not sure who would be looking after who though) and to quote my Granny "I am very strong! Sometimes u have to do what u think is right and this is it for me", I think this is some sort of text talk that meant she was missing me! After a very calm night (my Granny stayed until five o clock in the morning) I have had a nice, quiet girly day. Lots of reminiscing again about old times with the ICU staff, I have seen nurse Pauline who looked after me on my first dramatic entry to intensive care more than 5 years ago and one of the perfusionists Paul who looked after me when I was on ECMO after my first operation. My name still strikes fear into them!! My nurse today has been Anna and she has given me a really nice day, she gave me a nice wash, did my hair up all nice, put some matching pink sheets and blankets on my bed and got me feeling all comfortable. I have had a few enthusiastic hugs to help keep my lungs clear, and my oxygen levels are much better today. I made an agreement with the doctors today that they wouldn't try to do anything silly, no weaning and in return I would give them a much better day, a good deal all round. I am still fully ventilated but occasionally I grace my mummy and daddy with my presence and open my eyes and wriggle my arms a little bit. I am still being paralysed temporarily though when the enthusiastic hugs take place, apparently to relax my muscles! There is a mutual agreement not to talk to me today so I can rest, no stories or anything, I have been getting quite excited whenever I have been read to. I am supposed to read every day but my mummy says that my school teacher will understand and won't be cross with me, but I do love my stories!!! The Kidney consultant has been to see me today and after a chat we have jointly decided that my kidneys look as though they have woken up so we have agreed to stop the dialysis on a trial basis and see how I get on, I am quite happy because it isn't the most dignified of procedures. My little brother Ben has sent me a get well card and it has a cute photo of him with his watering can, we are all really missing "That Boy". My daddy's cousin Alison is doing the Manchester 10km run on Sunday, I was hoping to go with my little brother on a choo choo train to Manchester so I could cheer her on, but it looks more like I may have to cheer from afar! As i run this blog as a not for profit organisation it would be great if anyone has a spare £8009 pounds or even a bit of pocket money if you fancy sponsoring Alison, all the money she and her friend Bex raise is for Alder Hey hospital and will go directly towards helping little children like me who need a bit of medical attention! The link to her fundraising website is www.virginmoneygiving.com/team/AlandBex I would really like to send a massive pink set of thank you messages to everyone for all the texts, messages and blog comments, my daddy says he will read them to me when the verbal ceasefire has been lifted!