Thursday, 30 September 2010


The title will explain itself in a minute!!

Monday was a write-off because of the immense bellyache which lasted all day...i even had a bath as the warm water helps the pain but i hate baths...i get bored after 10 mins! I went to set up my feed pump at 11pm that night and set the rate (to tell it how fast to go) and then set it to run so the feed would reach the end of the tube. It didnt run. I went to turn it off to start again and even when it was off it showed the rate on screen - it had frozen. I got the book out and as i was trying to find out what to do, the pump started flashing and beeping even though it was off!! There was nothing about it in the book so i rang the emergency helpline and they said i would need a new pump. The fault is apparently very rare and she had only heard it happen to one other woman - oh surprise surprise!!

I said i wasnt waiting up for a emergency overnight delivery and that missing one feed wouldnt hurt so i scheduled it for 9am. We had to wrap up the pump in a duvet and stash it in the cupboard so we couldnt hear the beeping. The battery only lasts a few hours so it would die during the night - however, not in my bloody case!! Mum got it out in the morning ready for them to pick it up and it was STILL beeping - how is this happening???? Anyway they didnt come until 1pm so by this time i was ready to throw it out the door and the driver had the cheek to say "that will annoy me".

Later that day i had hospital clinic and it was another success!! 2 good clinics in a row - im not used to that! My weight had gone from 46kg to 47.1kg (3kg to my target!!) and my lung function had stayed stable at 26% which i was happy with as it meant it wasnt a fluke! I had to have a trial for a new nebuliser which is called Bramitob and they had to check my lung function before, 15 mins after and then 30 mins after. After i was bloody knackered, 8 lung functions!! Fun times. The nebuliser didnt give me a reaction so its ok for me to have but i have to get used to the taste - its horrid and tastes like feet :( and like im inhaling hairspray! Me and mum celebrated by going Lakeside shopping and i brought a hat lol x

x Lots of love x

1 comment:

  1. that post made me laugh, you dont have much luck do you lass?! The invincible feed machine, haha!