On Monday I went back up to Brompton for an appointment and to see if I should stop IVs, as the two week course had ended. The good news was that thanks to the steroids I was on, I'd put on 1kg! :D So currently around 45.5kg. Other than that, there had been literally no change to my lung function or sats :( So I'm trying another week of the same IVs. I think I probably need to change IVs really, but might do that next week if there is no improvement again.
Spoke to the dietician about having a PEG put in and I now know more about it. I'm also emailing a woman who has had a few PEGs, so she is telling me her experiences and answering all my questions :) She's been very helpful! The dietician thought it would be a very good idea to have a PEG put in to help me gain and maintain weight, and they are hoping to put one in before Christmas.
Next time I blog, will probably be when I'm 21! I'm getting so old lol x