Over the last couple of weeks we have enjoyed the start of the school holidays by going out loads. We have spent lots of time with lovely friends, been to parks, blackberry picking, bike rides, swimming, BBQ's, he's been to a football party this weekend (thank you L, you are a great friend). Once over the tonsillitis, he was up and about and lots of people have said how great it is to see him looking so well. In fact, we always have comments from people about how well he looks - it's great.
However, all is not always well. His CF team list him as 'colonised with pseudomonas'. This is a bug which adores the CF lung, and would not affect other healthy people. This means he lives with this bug in his lungs all the time. But at times it affects him only a little. He inhales antibiotics and takes others by mouth which keep it at bay. Occasionally the infection flares up, and this is called a exacerbation.
As well as the Pseudo, he grows some other bugs from time to time, and will also catch as many viral bugs as we all do. Viruses are not treatable, and leave less damage in their paths, but they do make him more susceptible to secondary bacterial infections - they help prime his lungs ready for an invasion. We hope that if someone has any kind of chesty cough they have the forethought to avoid contact with us to limit this risk, but understand that it's not always possible, especially with kids (if they had a known bacterial chest infection, then I am sure they would avoid us like the plague).
I guess my point is, having a chest infection when you have CF is not the same as having a chest infection when you are healthy. He can sometimes present without fever, without fatigue, without achy bones, but with a nasty old cough. This might sound great, at least he feels well much of the time, but we can't ignore even the slightest cough as this invisible enemy is down in his beautiful pink lungs, setting up camp, and causing irreversible damage, inflammation and scarring.
So although he is feeling much better, running round having fun in the paddling pool, we will worry until all the test results come back clear and the cough subsides completely. With physio today he was coughing and coughing and coughing. It is heartbreaking. In the night I even heard him going cough cough huff, which is what he is taught to do in clinic (a huff clears sputum more effectively than a cough) - He is learning how to better manage his cough on his own, I'm just so sad that he has to. I'm pretty sure my cough radar is more acute than most, you might hear an occasional cough, I hear every stinky one like a poke in the eye.
We know that he is on the full whack of medication that they can throw at him orally and inhaled - if the cough is no better, or the lab results show that he is growing something that is not sensitive to the drugs he is already on, or in fact worse, it is, but they aren't working, then he'll need more IV antibiotics, which means going in to hospital. In the summer holidays. That will suck.
So, this is why we worry, and why when you might say he looks great, that's lovely, thank you very much, but we can't always share your joy entirely. Come lie in bed next to him at nights, he gives a lovely hug but you won't get much sleep.
Goodnight all.
