Today we had an emergency appointment with our favourite consultant. We are so lucky, we have 3 amazing consultants on the team, and have a long relationship with each, and admire them all in many different ways. Anyway, I digress. His cough isn't improving at all, so we had to go in. He has started to feel pretty grotty now too, and just lieing on the sofa his breathing sounds like the crackling of an open fire.
The bad news was that his lung function (the main measure of wellness in CF) is down 15% from last clinic - and it wasn't great then. He really struggled doing the tests too, but tried so hard (love him so much). Blowing into a machine both forcefully and for as long as possible induces lots of coughing, so the graphs come out looking like the outline of the Alps. He's also lost weight, which they are concerned about. Good news is the lab results are coming back clear so far, but that doesn't mean there isn't infection down there, only that the sputum he produced for that sample, from that cough, didn't contain any, but hopefully it goes some way to saying there is no heavy growth yet (more tests today, so wait on those results now).
The plan is to try a new oral antibiotic, Cipro, which is the dude of all oral antibiotics for 3 weeks (problematic side effect; it makes him super sensitive to sun, so almost always looks burnt, even in winter, so bring on the red face). If he is no better (or worse) by week 1, we go back in, start IV's immediately. If he is a bit better by week 1 we carry on with the Cipro, but if not completely better after week 2 we go back and start IV's. If he gets better, just complete the 3 weeks of Cipro, Bobs your uncle.
The other change, and the one he is very unhappy about, is swapping back from Colobreathe to Promixin. He was on Promixin for years until just a few months ago. It is a twice daily nebuliser, which usually takes him about 20 minutes a pop. We were very excited when Colebreathe was licensed as this is a dry powder inhaler; just breathe in, hold and go. But when we finally received our new toy, it wasn't quite as great as we had hoped. It's REALLY hard for him to hold down, and makes him cough and splutter all over the place. He has tried so very hard, because we all wanted this to work so much (the mixing up and refrigeration of neb drugs, and sterilising the parts, and problems with the machine itself all make nebulisers very frustrating at times, and make things like sleepovers much more complicated). So now, along with the DNase he nebulises daily, he is back to 3 nebs a day. So potentially an hour day (he could do them in less time if he focused more on his breathing, but he chooses not to, sadly leading to lots of nagging on our part). Sadly he blames me for this decision, but really it was a joint decision lead by his consultant and we have to put his health above convenience.
So, not altogether great, but another chance to kick bug butt before we cave into the last resort - IV's. Isaac and I have an ongoing analogy on everything to do with his chest infections;
The bugs have set up a small camp in his lungs. They have recently allowed further visitors in and expended the site without permission, they litter all over the place and are generally a dirty smelly bunch. The last lot of antibiotics were arming his white blood cell army with handguns. The Cipro arms them with machine guns. If that doesn't kick them off the site, we will send in the heavy artillery - the IV army.
We live in this 'will we or won't we be going in for IVs' uncertainty not infrequently, and we usually manage at home, so hopefully the Cipro will be enough again this time.
In other news; we had flash floods last week and the kids were able to canoe down our road. Very cool; The boys have just 3 days to go until the Canoe to the Coast challenge (you can still sponsor them, see blog below for link); Rosa's (the toddler, must stop calling her baby) new phrase is 'shub up Mama, luff youuuu' (as she shoves me over in bed), melty heart!; We are soon off to Wales with the lovely F's. Lots to stay well for. Well wishes please (and thank you for all the lovely comments people have sent on FB).
Have a great day x
