Another year, another sick CF Christmas ‘break’ for my little lady. Thanks Santa for your second-year-in-a-row delivery of Parainfluenza and your ‘surprise’ gift of post-bronch pneumonia for a little extra, unexpected excitement. You arrived at exactly 3.30am on Christmas morning, bang on time for ‘Christmas fever’. If we are, in fact, on your nice list, I’d hate to see what the naughty nellies were given. Next year, please deliver to my house one extremely large DULL MOMENT. It is the only thing my family craves at YuleCrueltide.
For some reason, the cruelty of (any) sickness at Christmas is something that’s uniquely unquantifiable and intensely loathsome. It’s as if the baubles are laughing at your well-rounded stress and the fairy lights are flashing intermittent ‘fuck you’ signs in your miserable face.
As we emerge into the New Year – still coughing like it’s 2016 I might add – I find myself clinging to the phrase ‘It could be worse’ with every last sticky pad of my sanity. Yet it brings me little comfort as my mind appears to be embroiled in a fully-fledged war with demons that are possibly greater than the physical ones we are facing.
But in an attempt to convince my curled-up-in-a-ball-rocking mind that ‘it could be worse’, here are the actual reasons why it genuinely ‘could be worse’.
We went to A&E twice, but we got home again.
The previous two Christmases, we went to A&E and stayed for 2 weeks. This year, we went to A&E twice but came home again. This is a testament to the super strength of Little Miss. Sure, her sleeping sats kept dipping into the 80s. Sure, she’s coughing like someone who smokes 60 a day. But she’s still able to sit up and play ponies and convince the docs that she’s got this shit under control. (I need lessons from her.)
We’ve been dealing with low sats, but have managed to avoid being oxygenated.
Thank you four-hourly Ventolin nebs. This has never been enough for Little Miss in the past, but by the skin of our teeth and the steam of salbutamol, we’ve pulled it off. I may be suffering from PND (Parental Neb Depression – where you do nothing but administer and sterilise nebs for weeks on end, in a state of frenzied worry), but there is a success story in the blur of exhaustion and cough-till-you-puke-athons, should you choose to see it.
We’ve been treating with the wrong antibiotic, but there is a right one.
While the Parainfluenza has to just run its long, marathon course, the chest infection can be fought with antibiotics. Unfortunately we spent 12 days on one that this particular bacteria is unaffected by, but we’re finally on a different one and we’re hoping that we’ll see an improvement soon. The ‘it could be worse here’ is that many bacteria that CF sufferers culture are resistant to antibiotics so we’re lucky that the one we have is just resistant to penicillin. USE ANTIBIOTICS PROPERLY PEOPLE. People with CF’s lives depend on us not abusing them into oblivion. The phrase ‘post-antibiotic era’ is the scariest word combination on this earth to families like ours. Let’s protect the antibiotic sensitivities that are left.
Christmas is over.
So I won’t have to feel sorry for us at such biblical proportions hopefully for another 12 months. I’m not usually one for wallowing in self-pity, but Christmas unearths my depressive tendencies and ignites them with its humbug horrors. So long jingle bell-hells!
The coughing will stop sometime, right?
I can’t explain how every breath-stealing coughing fit causes a new break in a CF parent’s heart, but it does. To see a 4-year-old with lungs that can’t cope with a walk from the car to the hospital door is an injustice that my mind will never be able to reconcile. My little lady has been coughing since September, with a peak of RSV hell at the end of November and Parainfluenza purgatory from the end of December to…(please insert a coming soon date universe). It has to stop eventually. Doesn’t it?
So, in conclusion…
We’ve lost a little weight. We’ve lost a lot of sleep. And we’ve also lost a chunk of mental strength. But we’re here to tell the tale. So I guess it’s true that ‘it could be worse’.
Illustration courtesy of the talented Olivia Golden, @goldenwonder1
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