Cough watch!

Cough watch - My notes in hindsight:

Cough watch!

Every day we are on cough watch.

Currently Arlo is on what will end up being a month’s course of antibiotics to try and clear a chest infection. So I am monitoring whether his cough is gradually getting better - or worse - or drier etc. etc.

I think a lot of people think I’m being paranoid or overprotective when I literally count coughs and make notes on what they are like.

On my run yesterday I bumped into two lovely ladies I see regularly and they said, “Oh but he looks so well. It can’t be that bad.” And I thought how much I wish that were true - I’d love to be able to take comfort in those words.

But the sad truth is that just because a person with CF doesn’t look ill, it doesn’t mean there’s not something more sinister going on inside.

The aim of the game is to catch any cough as early as possible. A new cough is likely a sign that a new bacteria has got stuck to the mucus inside the lungs - and we want to get rid of that bacteria ASAP so it can’t make a home there and start causing inflammation and damage.

And of course, once we know that Arlo has cultured a new bug, we need to monitor him to check the treatment we’ve been given is clearing it!🤞

So even if Arlo is his usual smiley, bubbly, energetic self (and honesty this boy makes my heart hurt with how happy a baby he is 💙) that doesn’t mean we should ignore his cough.

And I am not being a worrier by getting on to his paediatric team right away - I am just doing what all CF mamas have to do.🙏🙏🙏

So I will always be on ‘cough watch’ and I think it’s fast becoming my superpower to hear a cough from afar.🦸‍♀️

Here you can see two diary entries from the first time Arlo had a cough at around 7 weeks old! I remember it being utterly terrifying!

Sunday the 20th of September

Arlo’s age: 7 weeks and 4 days

Well...never speak too soon eh?!

After my gushing post in the small hours of Friday about how great Arlo was doing, we have had a rather bad couple of days and I am now too worried to sleep.

It all started on Friday morning, we started well feeling refreshed and having given antibiotics. I got up and showered. Arlo had a long feed which made me happy cause he’d had short feeds in the early morning and I wanted to get a good amount of milk in him. I then needed to get us dressed and out the door ASAP to register him at the new gp surgery in time to keep a reserved appointment I had for him for his immunisations. And I decided I also wanted to get his PEP out of the way before we left otherwise it would be quite late in the morning before we could do his physio.

So we did his PEP and he really, really struggled and fought to get the mask off. We managed to get the 10 minutes done and he looked so wiped out I thought I’d let the poor little man chill in my arms for a minute. But when I lifted him up he let out a few coughs and then projectile vomited all over both of us - and the sofa.

It was actually really scary for me - I can’t tell you how much it looked like there was - and how panicked I was at so much milk. I called Martyn in a fluster but he said to stay calm, babies throw up and it was normal, not the CF. I guess I am going to worry that everything is due to his CF rather than just being something that happens to a baby or that all babies do.

But I was worried and so I kept an eye on him throughout the day and he seemed totally fine, totally perky, normal temperature etc. - the only thing I noticed was that he coughed a few times when he was picked up or moved - or sometimes just when he was lying down. This really started to concern me. Had he been coughing like this all the time but it was only now that I was really switched on to it because I was looking for something? Babies cough right? Even without CF.

But this cough continued throughout the day yesterday (Saturday) - it’s very occasional but I don’t like it. It doesn’t sound congested or like there’s mucus or anything in his lungs. It sounds like he has taken something down the wrong way. It is more in his throat than from his chest I think. But it still worries me. I just keep thinking about how he’s too young to have a chest infection and I hate to think he might get damage to his lungs when he’s only a few weeks old. Especially given that they say prevention and avoiding damage is key.

And I keep thinking - what if I did the PEP wrong a couple of times and that’s caused this? Or what if there was a tiny bit of water in the PEP mask one time? And I keep questioning everything I’m doing for him. Am I doing anything wrong? Am I not a very clean mother? Have I given this to him?

It’s a horrible feeling. Just wish I could check his lungs myself somehow - just peek in and see they’re okay! Or I knew what to listen for on a stethoscope!

Gosh - I have text Victoria (our nurse at the hospital) and will wait to see what she advises. I imagine we can go into hospital to get him checked over. I just hope I’m wrong and it’s nothing but I’ve always been one to trust my instincts and I’ve not been wrong before - sadly.

Saturday the 26th of September 2020

Arlo’s age: 8 weeks and 3 days

Phew! What a week!!!

As you may have guessed, no news from me since the last entry was definitely good news! Of course, we can never truly say “it’s all fine” when it’s a baby with CF cause I’ll always be keeping an eye on any coughs of any kind, but the team at the hospital were confident that last weekend’s cough did not warrant any extra treatment or other checks. So I am just continuing to keep my ear out for any nasty sounding “persistent and wet” coughs.

But for now Arlo seems pretty good! ***touches everything wooden around me*** I think as a CF mum - and maybe as a mum in general - I am realising I will be too superstitious and will never want to jinx anything by saying “Arlo’s cough is nothing to worry about” or “we are in an established routine” or “he sleeps really well”! Ha ha!