Friday, 27 September 2013

Camp it up. The louder the better!

Posted by Juliette
So I thought I would blog about the fun we all have when we give Sammy his physiotherapy. It might sound a bit odd to you that it is fun as perhaps you will see it as one of a number of chores we have to do to help Sammy stay one step ahead of his CF but if we saw it like that then for one, we would be miserable and two, Sammy could grow to see it like that.
 Therefore as Sammy will/may need physio for the rest of his life we choose to make it fun and in this post I want to explain why and how we give Sammy his physio and then how we camp it up!*
Everybody has mucus in their lungs, it's there to help protect the airways. The problem CF causes is that the mucus is much thicker and it therefore doesn't move around in the same way making it difficult to shift and cough up. An added danger is that it is a warm, moist, sticky environment, so bacteria love it, therefore any one with CF has an increased risk of developing chest infections.
So what? you may think. Everyone gets chest infections and they just get on with it, don’t they? But this this the depressing thing; with CF, each chest infection has the potential to kill off some lung tissue. Once dead this tissue will never recover resulting in reduced lung capacity and function. Every infection has the potential to cause this irreversible damage and low lung capacity and function will either effect quality of life or will reach a state where the amount of functioning lung is not even compatible with life itself. Yes you know what I'm saying. I don't want to actually put it into hard text because I don't want to read it back. 
So I guess if you didn't already understand why I'm obsessive about trying to keep Sammy free from colds and infections, you do now.

Right, sorry if I brought you right down; let me pick you back up again. We do two main things to help Sammy clear the thick mucus from his lungs and stay free from infections. We give him an antibiotic every day to help prevent bacteria from growing in his lungs and we give him physiotherapy. The physio is normally given twice a day for five minute at a time. We increase the amount we give if he has any sign of an infection. Currently he has a cold (Panic! Panic!... No he's doing fine) so we do two lots of 10 minutes until the infection has gone. We can do physio up to four times a day if necessary. The physio helps to move and clear the mucus and when he has a cold there is more mucus to clear, hence more physio. 

There are a number of different ways to do physiotherapy for someone with CF but currently we do percussion, also known as patting. Traditionally this is done using cupped hands but on a baby this is quite tricky so we use a small rubber cup (which is actually a paediatric oxygen mask) to pat Sammy firmly on his chest and back. We have discovered that Sammy loves it if we do it to music and it is the choice of music which makes it so much fun. Mark has made a playlist of largely fast tempo, upbeat tracks on his phone and we sing along and jump about whilst patting. I only hope Mark's terrible song choices don't rub off on Sammy as he develops a musical taste of his own. 
 Mark’s favourite songs for patting include:
Waterloo - Abba
Laura - Scissor Sisters
9 to 5 - Dolly Parton
Brown Girl in the Ring/By the Rivers of Babylon - Boney M
Rocket Man - Elton John. 
My new guilty favourites chosen from Mark's camper than camp playlist: 
Call Me Maybe - Carly Rae Jepsen,
Price Tag - Jessie J
The Clapping Song - Shirley Ellis. 

Have any of these song choices put a smile on your face? If so you can see why Sammy loves it, and his face really does light up when the music comes on. So which one is your ear worm for today? 

*You may notice that I couldn’t decide between writing that Sammy will need physio for the rest of his life, or that he may need it. As things stand right now he will. But we are hopeful that with enough money and research, scientists will be able to find a cure, or at least effective treatment that will allow a full and rich life expectancy and remove the need for physiotherapy. Such a treatment is already available for those people with the rare G551D mutation, so something to help people like Sammy is not out of reach. In case you haven’t spotted it, this is just my cheeky little plug to ask you to sponsor Mark who is running half a marathon for the Cystic Fibrosis Trust as they fund the research. – As always, our sincere thanks to those who have already donated.


  1. What an eclectic mix of music! Loving Brown Girl in the Ring, reminds me of being a child xxx

  2. Glad you found something from the list of songs for you :)

  3. Any song suggestions? Just been told to add a bit of Queen to the playlist :)