Day 20

Feeling pretty popular to be honest with you all, i noticed i have had over 400 views on my Day 19 blog.
I was so shocked and impressed by that. That's 400 people interested in what i have to say.
400 people that have been reminded of organ donation reading that blog. 400 people that have a little more insight into my life with my Cystic Fibrosis.

My doctor came in today just to make sure i was still wanting to go through with everything before he sent the letter off. Of course i said yes so the letter has now been sent off to the transplant team and now i just have to sit and wait to hear something in around 4-6 week.
I am going to estimate that i'll probably be on the ward when they have time to see me.

Today i was took off promixcin and trialled on a new antibiotic nebuliser called Azetreonam.
We're hoping this does more than what promixcin did for me.. which was NOTHING!

Here's the news we have all been waiting for.....


my lung functions are back down again to 0.85 from 0.9 so not a huge difference but i have been in for 5 week now, it is most definitely time to go home for a bit and i am even off on a little holiday to visit family over the Easter Weekend in Essex so that will be lovely. I am really looking forward to it.

I have a few things i want to do while i am out:

  • i want to get a gym ball as have been doing some exercises with physio using the ball and i want to keep them up.
  • i want to eat TGI's, Subway, A cooked chicken from tesco, Florida chicken and dippy egg & soldiers.
  • i want to go to the trafford centre and hunt a new sweet shop down that i have been told is a recent addition there. So going on Saturday with Emily :)
  • i want to get back into the gym.
  • i want to HOPEFULLY start my college course that i was supposed to start when i came in.
  • i want to buy some things for my new room at my dads, new bedding etc.
  • i want to get a bit more creative
  • i want to go clothes shopping with my papa one day, he is good at clothes :)
  • i want to go to bingo!
  • i want to go to a quiz night and pretend i am on the chase :)
  • i want to go for a little drive somewhere nice
  • i want to continue playing my billy bob ukulele!
  • i want to hear my dad's band play again :)
  • i want to attend Alfie's first birthday party
  • i want to go swimming with my sister
  • i want to take my sister out more, just me and her

so that should keep me busy for the 2 or 3 week i get out!
have to squeeze Essex into there for a few days too!

Day 20: above

when i lay back on my hospital bed, the thing i see above me is white tiles.
in this room, there are 48 tiles.. i counted them whilst unable to sleep one night
7 tiles length ways and 9 tiles width wise but then the some of the room is cut short by the en-suite bathroom. 
i used to always say when i got my own house, i wanted a room painted black, with black out curtains, nothing in the room but cushions, pillows and bean bags and blankets and on the roof, i wanted lots of little lights drilled in the ceiling to create a starry sky effect. 
i just think it would be such a lovely room to go and relax in and probably fall asleep in too. 
when you look outside at night now, you're lucky to see a couple of stars.. it makes me sad :( 
so i thought if you cant see the stars at night, see them all the time in an artificial night sky room! 

sweet dreams bedbugs.. 
sophie xoxo
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1 comment:

  1. haha brill comments about the hospital tiles. Demi is only 2 so obviously we havent been in hospital as much as you have. i.hope you manage to get through your to do list xxx please keep blogging you are an inspiaratio to me and an amazing person xx