Cystic Fibrosis, Family

Update on Joe

Joseph is a bit poorly at the moment, in fact he has been poorly on and off since starting nursery in September. We were told to expect this, but it has still hit us quite hard.IMG_4068

Luckily so far it has been mainly viruses and upper respiratory infections, plus the odd upset tummy. Currently he is on extra antibiotics, he is on his last dose of this two week course but he unfortunately is still poorly.

Up until September he has been remarkably well, so this current situation of continual coughing is quite alarming. The past few weeks he has just been coughing after exercise and physio, but the last three days the coughing has become continual and last night we could hear him coughing repeatedly, so much so that we had to wake him at midnight to give him an inhaler. We are waiting to hear back from the hospital to see if he needs to go on another course of antibiotics or if there is something else we need to do. Hopefully it’s just another virus but I can’t help worrying that it will develop into something worse.

The good news is he’s ok in himself, not lethargic although maybe a little less active and he doesn’t have a high temperature which can only be good signs.

How do you stop yourself from thinking the worst?

The thing I find with Joe’s situation is that the waiting for something to go wrong is in some ways worse than when he actually does have an infection.

It’s the sitting around listening to him cough and wondering is this the time that he will have a chest infection? Should I send him to nursery? Is this just normal or do I need to ring the hospital? Is that a chesty cough or a throaty cough?

It’s just something we’ve got to get used to now I know, but it’s still difficult and confusing. The responsibility of knowing what’s right for your child is overwhelming at the best of times, but when their health is involved it’s almost paralysing- I continually second guess myself and question my decisions.

I took him to nursery yesterday as he seemed ok, but  when we got there he cried for 15 minutes that he wanted to go home and coughed his little heart out. I was just about to take him home when he suddenly toddled off to play with some dinosaurs and never looked back. I sat in the car on the car park and sobbed-it’s so stressful!  I just felt so guilty and torn up- how do you know whats best for someone when they cant explain how they feel?!

Any way moan over! If any CF moms out there have any advice than give me a shout!

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4 thoughts on “Update on Joe”

  1. absolutey similar thing going no here! Know exactly how you feel! Our 1 year old started nursery in Sept too, but the team did warn us Winter and nursery would mean a lot of treatment doses. It sucks. He’s got a cough now that sounds wet. So scary for us CF parents!xxx

    1. Thanks so much for your reply, sometimes I feel like I’m not coping well at all and that I shouldn’t worry so much but it’s reassuring to know other cf parents feel the same! It does suck! You’re right! X

  2. My little one is nearly 10 months and I had to go back to work part time when he was 7 months. I was so worried about what I was going to do about Childcare and dreaded the thought of putting him into care with a group of other children.
    We live in the country with the nearest town an hour away and am quite thankful that one of the local farmer’s wives looks after my boy the three days a week while I’m at work.
    It means for now he gets one on one care and doesn’t have the threat of picking up germs from other kids.
    I know I can’t wrap him in cotton wool, but at least while he’s still a baby and still developing, he’ll have less exposure. I catch up with friends with bubs once a week, so he can still learn to interact with other bubs. But my friends are fully aware of his condition and don’t attend our social events if their child is poorly.

    1. That’s great, we did the same we were lucky enough to keep Joe away from nursery and childcare until he was two, his team at hospital recommend he start building up his immune system before school so we started him 2 mornings a week. It’s definitely been a challenge! X

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