His tummy issues are still very much up and down. He still has pain. Which pains me. If not better soon, he will have a CT scan to look for abnormality in his guts, for which there is a small chance of needing surgery. In the meantime, we are reintroducing the big guns for DIOS treatment, Gastrograffin, which last time (we think it was that) gave him a spectacular rash. We still hope this is a side effect rather than an allergy, and we can keep using it, as it works, and he just can't stand Movicol and the other 3 drugs they have prescribed him which are basically Movicol with a different name and in a different packet. They do that a lot with drugs.
Chest wise he is great. We tend not to freak out about positive cough swabs these days, when we know the bugs at least. We know from experience to focus more on the symptoms than just the lab results. He is classed as 'colonised' with pseudoA (which basically means the bugs have set up camp, and plan to stay, but they may only be small camps, and it's only when they invite friends and have a party that it causes a big problem; which in CF they call an exacerbation). It's crappy that he has campers at all. But right now, he feels great. And I'm happy with great.
We have news about the clinical trial (Ataluren) and very much hope to join (and in London, woohoo; before we were faced with travelling to further, less exciting cities!). But I must say it is a frustrating wait. We so much want to be part of something that may help him, and others. And for the first time, potentially taking a drug which targets the route cause of CF, rather than just the symptoms. It feels like a positive step, but we still feel no closer to knowing if we can join or not.
That's about it really. There is always SOMETHING going on, but it's not all bad. Have a great day x
