When Cystic Fibrosis wants to remind you it’s still there! 

If there is one thing CF has taught me, it is that I shouldn’t get too comfy because the minute I do it will throw something into the mix to remind me it’s still there lurking, there is no good time for CF to raise it’s head but sometimes it just seems to choose the worst possible time! With Chester it’s usually around the time work is manic or we have a family holiday booked. 

So often people will say “Cystic Fibrosis? Really? But he looks so well”.  I have learned to take this as a compliment rather than allowing it to upset me, and I agree on the outside he does look well but we work incredibly hard to keep him looking that way, it’s sometimes easy to forget about CF because he does look so well.  It’s the underneath where we can’t see that is a whole different story and that’s the scary thing about CF.  It’s the not knowing and not being able to see that is the hardest. 

A week ago the decision was made to take Chester off his remaining prophylactic antibiotic, this is pretty much routine when children with CF turn two.  This antibiotic is something he has been on since birth and although very daunting, he has been well and not needed any back up antibiotics in quite some time, he has only needed antibiotic treatments to eradicate pseudomonas which his prophylactic antibiotic wouldn’t really touch. 

I saw this as a step forward, I see that he’s getting bigger and stronger, and I felt quite relaxed and proud of the fact that this is the first time since his birth that he has been antibiotic free, another step towards “normality” for us. 

So I shouldn’t have been surprised that given it’s September the season of coughs, colds and flu that not even a week later CF rears it’s ugly head to remind us that we are perhaps getting a little too comfy.   It started with a sore throat and now he has developed a terrible cough that is visibly painful for him.

All I can think about is the damage and scarring this constant coughing may be causing to his lungs.  With annual review not far off we will get to look back over this years’ treatment and compare his chest X-rays from one taken a year ago, always an anxious time for us and quite hard hitting for some when they see the damage CF has caused in the past year.

His awful sounding bark kept him awake last night and that coupled with a high temperature made him generally unsettled and he started to pat his own chest indicating to us he wanted and needed physio, so at 3am there we are like zombies giving him physio in the hope it will ease for him to catch his breath and get some sleep.

After some pain killers and chest physio he finally went to sleep sprawled on my bed resembling me after a night out drinking. 

I wasn’t overly content with how he was doing and with surgery due at the end of the week I felt I needed to check with the Doctors about starting him back on antibiotics.  A call to our local assessment unit where we are fortunate enough to have open access and I find myself talking to a staff nurse that knows Chester, I don’t know why that surprises me when he’s spent so long there and after a conversation with the on call registrar Chester is back on antibiotics.

A few doses and he should be back on track for his port surgery on Friday and there it is a quick reminder to me from CF not to get too comfy.