P-E-P, as easy as A-B-C

PEP and physio - my notes in hindsight:

Baby PEP (as Arlo’s paediatrician called it the first time they gave us Arlo’s PEP mask at our 2nd CF clinic) is the physio that Arlo has to do twice a day. And it’s not exactly as easy as A-B-C bless him!

PEP stands for Positive Expiratory Pressure. It is used as a form of physio for people with CF to help clear their lungs/keep their lungs clear of sputum.

When Arlo breathes through his PEP mask, pressure builds up in his lungs which helps to keep the airways wide open and also allows air to get behind any sputum in his lungs so that it can be coughed up more easily.

The equipment consists of a facemask with a range of coloured expiratory resistors - Arlo currently uses the black resistor which is the ‘easiest’ one but as he gets older he will move on to different colours to increase the pressure.

We currently have to do 2 rounds of 10 minutes - one in the morning and one in the evening. It can take us anything from 10 to 40 minutes to actually complete the required 10 minutes of PEP depending on how much Arlo is resisting it - bless him.

I have a diary entry from the first day we did PEP with him when he was nearly 5 weeks old and I’m sooooooo jealous of how easy it was back then! Now that he is over 6 months old he can be incredibly resistant sometimes.

But for the most part he is a total trooper with his PEP and I am proud of him every single day. Whether it takes us 10 or 40 minutes, he is getting it done and reminding me that we should all ‘eat our frogs’ and get on with it!!👊💪👊

Read that first diary entry below:

Tuesday 1st September

Arlo’s age: 4 weeks and 6 days

I was brimming with pride today! Our little man is such a trooper! One proud mama for sure!

We had the CF clinic this morning where we met his 2 physio ladies. They gave us a PEP mask to do some physio twice a day with him - for 10 mins each time if we can. We used it for the first time in the hospital whilst they showed us how it’s done and Arlo just took it in his stride. He’s so good it’s unreal. And when we did it for the first time back at home this evening he managed 10 minutes straight away. Not really any fuss.

I know there will be times when he doesn’t want to cooperate with all this medicine and physio - especially when he’s still young and we can’t explain why we’re asking him to do it. And probably when he starts to have his own mind as he grows up and he just wants to be ‘normal’ and forget about his CF. Both Martyn and I are very conscious that we will have to face that at some points in the future.

But today he was such a star - and today was another good day. So I intend to ride on this positivity and look proudly at him whilst he snoozes after a feed - he is so perfect.