Apologies for venting rather a lot in my last post. What I didn't really say was that poor Will is suffering quite a lot with this bug. I think things are getting better, but MAN is the progress gradual. We have graduated from peppermint oil capsules for gut cramps (yes, I was sensing a whiff of sandals and patchouli too, but apparently there is good control trial evidence that these help) to codeine for cramps and to slow down the gut (made Will's mind go crazy, he was trying to poo out Dorothies in threes - shouldn't have let him watch the Over the Rainbow final on Saturday) and now we're trying immodium. We have to be very careful with this as the CF gut is prone to blockages. The worry now is that one of Will's immunosuppressants - the mycophenolate - may be contributing to the diarrhoea. You're not supposed to take it on an empty stomach and, although we're trying to get food into Will at the same time as taking it, it's probably not really enough. He certainly seems to feel worse after taking his hefty pill dose in the morning. We're also trying to get enough liquid and electrolytes into him, but dioralyte really is foul stuff and doesn't help the nausea.
Anyway, apparently Jas is now keen to see Will, but they are "chocka" at Papworth at the moment. So looks like we'll head to clinic on Thursday for a probable admission. I guess this would be to take him off the mycophenolate for a while in controlled conditions. I'm now slightly panicking - being told the consultant wants to see Will but can't cos there aren't any beds freaks me out rather. But rationally I guess they'd find a bed if it really was an emergency.
So, we plod (and poo) on. Can everyone send Will some healing and constipating vibes please...
5 weeks ago