The last few weeks have been full of bliss and laughter; ponies, nature, and celebrating. Isaac (whose name means ‘the laughing one’) turned eighteen, which was more emotional than I had imagined. I know I say it here all the time, but he really is the loveliest, bravest and kindest boy, and we couldn’t be prouder. The way he just takes all the shitty knocks in his stride is inspirational to all of us who know him. So thankful he was well enough for his week of celebrations (presents, curry house, family, friends and a party), but the bugs are now getting the better of him yet again.
I can’t tell you how much I hate CF; I recognise this is a pointless waste of energy, but I do. For all it puts him through and robs him of. We’ll now start extra oral antibiotics to try and put off what feels like the inevitable; an exacerbation which only intensive IV antibiotics will dampen. His last course was just before Christmas, so it’s not a bad run for him, but still, I’ll never stop hoping for more. His lung function is down, but other test results from his recent annual review were more stable. Swings and roundabouts. Laugher and tears. Clinical trials feature regularly in my dreams, and give us hope, but we need this chance now, before his lungs are further damaged.
Since it’s still lurgy season for all, I’ll share a few of the things we try (beyond his CF drugs and physio) that can help with constant coughing, in case they can help you too:
- Keep well hydrated, like, super soaked, it will thin mucous and make it easier to clear.
- Ibuprofen for rib pain.
- Vitamin C (may not prevent infection, but can lessen longevity of symptoms).
- Sleep propped up on very firm pillows (we love a U shape one by Byre (available on Amazon) which is often used in pregnancy, we’ve found nothing firmer, and it never loses its shape).
- Hot honey and lemon.
- Huffing can be more effective than coughing at clearing mucous. Breathe deeply, sit straight, look up and huff hard and sharp, as quickly as you can. Can also be softer on the throat.
- Air purifiers.
- Fresh air and exercise, but rest too. Coughing and difficulty breathing uses a lot more energy than you’d imagine.
