Monday, 13 February 2012

Day 6 of hotel brompton!

So its day 6!- 149 hours iv been in this lovely hospital!! (im not a geek that sits here counting, although the bordem can make you do strange things in this place but...i have a cool little app on my iphone!) lol

the weekend was pretty standard, my lovely family looked excited when they came up on saturday to see me!! hahaha dad does his usual, grabs a seat, which happen to be in my wheelchair this week as the girls had already taken the chairs, also bare in mind my wheelchair is fitted for my size person and no offence to my dad but he is ALOT bigger than me lol, so yeah he grabbed his seat, pulled out his newspaper and says "whos getting me a coffee then" lol

Then i had my delightlful sisters as happy as ever, dad had probably wound them up in the car on the way up to the hospital or one had looked out the other ones window lol teenage girls in moods=beware!
also not sympathletic to me being in hospital at all, lil libs had a sore throat and it literally was the end of the world!! nothing compared!!- obviously i had no idea how it felt to be ill ;) then theres hannah who was just in the biggest mood ever because most of her mates had gone on the ski trip and she could have gone but decided not too...and she couldnt understand why we had to go out down the kings road! lol

it was nice to have some normality! growing up and not being treated as a "sick person" means the loved ones around me eg my sisters really are just like normal sisters and dont treat me any differently which i like....id hate it if they all came up and did the whole "oh george you ok" and sat there holding my hand.....ergh bucket please lol

so we all got ready, i put on 1000 layers as it gets chilly in the wheelchair when ya not moving about, oxygen on the back incase i needed it, esp when that cold air hits my chest! its horrible.
oh and to make me look even more special in the wheelchair mum brought me up a pink blanket to put round me whilst in the wheelchair....shes been trying to do this for ages...make me look like a complete goon basically!! she likes to break me into these things when im in hospital because she knows i dont care going out looking like a fool around here cause i dont no anyone!!

anyway despite what i thought it kept me warm and i quite liked it!! mums are always right ay! :)

so we looked in a few shops then decided to go to maccy d's!! the one down the kings road though isnt very wheelchair friendly and theres about 6-7 steps to climb up to the doors..so obviously i had to get out the wheelchair so dad could lift the wheelchair up.

now i dont no about anyone else that uses a wheelchair in the same situation as me, but theres always that awkward feeling of getting out, most people asume your in a wheelchair cause your legs dont work, well thats not the case for me and others...its our lungs that dont work. anyway so when i like stand up and get out i normally dont really wanna make much of a fuss just get on with it and not draw attension to myself, so i do so i get out of it, and then i hear "its a miracle, its a miracle" and i just cringe and turn around to see my mum laughing and jumping around like a fool!!- u no those days when your just not in the mood..it was freezing outside and just wanted to get in, looking back now it was quite amusing! bless her!!

so that was saturday, then saw my jd-lee on sunday, just chilled got a curry and some more redbull :)

over the weekend, iv been trying the morphine in the morning and asking for it before i go to sleep to ease of the pain so i can relax and get comfortable, it seems to be helping, need to let my guard down with things esp as they clearly can help! i feel quite in control of this though so i think im going to agree to carry it on if they think its right too.

todays been a chilled one,chest seems to be pretty good, i.vs have definatly kicked in! chest doesnt feel so tigt which is nice, my sats seem to be higher than usual staying at like 93-94% on room air :) thats without talking and sitting still but still thats good for me! :)

weight hasnt quite got up to my goal yet which is 40kg but it was 38.4kg today so thats better than it was when i was admitted so anything up is a plus for me!
doing my lung function tomorrow so really hope thats gone up from 13% . also got my new fatty drink called calogen today with all the calories in it and it smells like strawberry marshmellows...but looks like pure pink oil!

oh and the highlight to my day has got to be my new pill cutter- i no thats really sad! but iv never had this colour before lol

and heres a few more pics of my miracle anti-sickness drug! cost £50 for 2 tablets iv heard...personally i think there paying more for the packaging!

and for anyone that hasnt seen a feed machine before heres a little piccy

thats all i can think of saying for today

1,282 hours on the transplant list

love love xx

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