This week we received the dreaded pseudomonas call, this is the forth time we have had this call and it doesn’t get any easier to hear.
For those that are unfamiliar with pseudomonas it’s an opportunistic little sucker of a bug which is particularly difficult to get rid of and if left untreated can cause lung damage amongst other health implications. Eradication therapy is aggressive because it has to be and often results in two weeks of strong Intravenous antibiotics or a long course of strong oral antibiotics and nebulised antibiotics.
Receiving that call knocked the wind out of me, like I had been punched full force in the guts. As a parent one of my main jobs is keeping my children safe and out of harms way, and I somehow felt like I had failed and worst of all I felt like I had let Chester down again, that I hadn’t protected him.
I found myself retracing my footsteps, running over the places we had been since the last clear cough swab in February, thinking about where I could have gone wrong and my thoughts end up running away with me.
It’s impossible to know where he picked it up, and it’s exhausting trying to think about where he could have got it. Pseudomonas is all around us, in the environment, in the soil and pretty much anywhere warm and damp so unfortunately for those with Cystic Fibrosis or others with low immunity through other conditions it’s pretty much unavoidable and highly likely that they will come into contact with it at some point.
There are certain things people wth cystic fibrosis are told to avoid, pseudomonas hazards such as jacuzzi hot tubs, bath toys that can fill with water, mud kitchens and sandpits all of which are known for particularly high traces of pseudomonas.
We avoid these things and stick to the “rule books” as best we can. That said I don’t wrap Chester up in a bubble because if I did it would be no life for him, we possibly allow him to take more risks than we should, taking him swimming, puddle smashing, playing in the garden and swimming in Lake Geneva, but it’s knowing where to draw the line? To me quality of life matters. I want him to experience life and all it has to offer but I also want to keep him well.
Now I guess deep down I know this isn’t my fault, that it couldn’t be helped or avoided but it doesn’t stop the guilt, with Chester’s added tracheomalacia (floppy windpipe) it was always going to be more difficult to keep him well because it’s all too easy for bugs like pseudomonas to settle, I know this yet I still feel responsible somehow.
I often worry about what’s going on inside this little boy’s body that we can’t see, what’s lurking in there that we don’t know about, people often comment about how well he looks, and it’s true, he does look well and that’s the scariest bit about CF, because we can’t see what’s really going on in there.
I feel angry, annoyed and sad at the same time, that this little boy now has to be even more brave and even stronger than usual in order to fight this.
Chester will be Chester, he will be admitted for IV antibiotics and he will smash it, he will still be smiling, he will be strong and he will fight, we will remain positive and be right beside him while he fights and between us we will let CF know it isn’t going to win.
Chester is destined for great things!