This is going to sound really awful but when my eldest daughter was smaller I would rarely bat eyelid if she had a cough, cold and snotty nose. As far as most parents are concerned it’s just par for the course when kids are building up their immunity. How totally and utterly rubbish to then fear the most common, pathetic of illnesses. To us they’re a chore, I just have no time for colds, so annoying. For someone with cystic fibrosis, however, a cold can be potentially very dangerous. Cough and colds can lead to hospital admissions for IV antibiotics and cause irreversible lung damage which we cannot have happen. We need to keep Harriet’s lungs in pristine condition.
Since Harriet was born I can honestly say she has caught every single cold and virus going and then some. Six weeks is the best run we have had in two years without having a cough which is a pretty depressing fact. Every time Harriet gets a cold or cough she has to go on extra antibiotics, more medicine twice a day on top of all of her other medicines. Since the start of the year Harriet has started to follow quite a regular pattern of illness which is both baffling and exhausting. Every two or three weeks for the past eight months Harriet will catch a virus of some sort. She will always start with a dry cough and anyone who knows me will have certainly heard about it! Once the dry cough starts it is incessant. For two or three days and nights we do not sleep, we sit up all night while she coughs without any respite. There are no gaps or breaks inbetween the coughs, it is literally NONE STOP.
I defy any loving parent to lie in bed all night and listen to their child going through this without going in to comfort them. I say comfort, in our case she sits in our bed and watches the iPad while I try to cuddle her! She doesn’t get distressed at all, unlike me, who has in the past taken her to hospital when this first started happening. It is clear that she cannot sleep for coughing so I am certainly not going to make her try. I have discussed, or rather moaned at great length about this to our CF Team but no one knows why this is happening. Our team are really only involved if Harriet gets a wet cough, those are the troublesome ones, so at first we thought she may have recurrent croup. After two or three days of the dreaded dry cough it always then turns wet. Again, sounds awful but as soon as it goes chesty it is so much more manageable. She will then barely cough and can actually sleep all night. We were given a blue inhaler to try with the dry cough but we have found it provides little, if no relief. So puzzling, if anyone in the CF community has experience of this please get in touch!
We have to be thankful that throughout all of this Harriet has never been unwell with each virus. She is always full of life, happy and a joy to be around even when she’s not sleep for days- unlike me! Because we have followed this pattern for such a long time now, Harriet is going to have a winter antibiotic called septrin. She will take this daily throughout the winter to try and stave off any viruses. I have high hopes as I do not know how much longer we can keep up with these all nighters every few weeks! Fingers crossed for us it does the trick and breaks this awful cycle we are in.
If you’re reading this and have a cold maybe spare a thought for those with CF and be thankful that in a few days you will be back to full health. After seeing what my daughter has been through in her two short years and how she deals with it all so well I try to never moan or complain (much!) again. I read somewhere that one persons cold could be another persons hospital admission so please think of the vulnerable people around us and try to keep your germs to yourself!
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