Thursday, 15 September 2016

Not doing so great

Posted by Mark

Wow! Nearly a year since the last post. I suppose that since then there has not been a great deal to report in terms of CF although that doesn't mean anything isn't happening - just that it's all been pretty much business as usual. At least until last week when we got some bad news at our clinic visit.

It was all fairly standard stuff although we did remark that we had really been feeling the strain of it all recently. Although all of Sammy's treatment has become routine it's still really a drag. We try to make things fun for him so we are always inventing games for physio and meds and try and be enthusiastic and upbeat but the truth is it is really really hard when he doesn't want to do physio or take some medicine, and we would absolutely love not to have to make him do it but we do and it just wears you down after a while. (Although he did have a lot of fun when he got to go to a trampolining class recently!)

Anyway, we were at a pretty low point already through sheer tiredness with cf when the Consultant broke our hearts by revealing that the labs had analysed one of his samples and discovered that his lungs were infected with Pseudomonas.

If you're familiar with cf you'll know that the lungs of people with cf contain thick mucus which is the perfect breeding ground for bacteria that can be seriously damaging. Pseudomonas is particularly bad because it is very good at resisting treatment and so can easily become a chronic infection and can really impact a person's lung function.

Pseudomonas is an environmental bacteria that particularly likes damp places like soil, lakes and ponds, wet sand and all the fun places that we would love to let Sammy play. We have tried so hard to reduce Sammy's exposure to this bug so it was a real kick to find that we had failed.

Because of the seriousness of the infection, our team like to hit it hard. In many cases people will be admitted to hospital for a two-week course of antibiotics. In Sammy's case however, he has been put on a 3 week course of a really vile-looking antibiotic called Ciprofloxacin and a 3 month course of nebulised antibiotics twice a day. This involves some careful administration and our nurse specialist talked us through using the various syringes, vials and powders needed to make up the medicine before putting it into a machine that turns it into a vapour that Sammy then breathes in through a mask.

Throughout the 3 months that he's on nebs we will send regular cough swabs and hope that the Pseudomonas has gone.

To have this extra stuff to do on top of our normal extra stuff is a real struggle. We have worked out that the only way to fit it in with work and school and nursery is to start the day around 5am. Unfortunately we haven't really worked out a way yet to clear all the other things that need to be done in the day/evening any earlier so we aren't getting as much sleep as we probably should.

It's hard

BUT we are glad that they caught it.
AND we are are pleased that we didn't have to have an inpatient admission
AND we're happy that he seems to be responding to the medication. He was definitely lacking in energy and wasn't quite himself and we now realise that was because of the Pseudomonas
AND Juliette and I have got each other and we are an awesome team.

Joseph of course is a brilliant big brother as always and is quite enjoying that when Sammy does his nebs he gets to watch Angry Birds cartoons on YouTube along with him.

Sorry for such a negative post but I just wanted to get it off my chest. To end on a positive note we had a lovely week in Bournemouth at the end of the school holiday (before we knew about the Pseudomonas) so here is a picture of us on a steam train!


  1. You really don't have to apologise, you're clearly doing brilliantly at managing something that's very hard work. The post wasn't maudlin or self pitying in anyway, you have nothing to be sorry for. I hope Sammy kicks the bug very soon. (great name btw)

  2. ugh the dreaded pseudo!! My little guy got it too around 1 year old, I feel for you! Adding in all those extra antibiotics feels like an awful lot at first. If it helps at all, we are now pseudo negative (I feel like I never heard stories of people actually getting rid of it, just how hard it was to eradicate). I wrote up about it here in case you might find it helpful to see how our clinic handled it

    Good luck!! You got this :)

  3. Thinking of you and wondering how things are going. Did Sammy do well on the antibiotics? Did you have a good holidays?

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