CF doesn’t take a holiday. 

The summer holidays are well and truly here, families everywhere are packing up and taking their children on holiday. Whether jetting off abroad or setting off on a staycation camping trip, planning, prepping and organising is underway and people everywhere are getting ready to go and make memories with their babies and enjoy some quality down time away from work.

We are just under a week away from our annual European road trip and with work and hospital appointments this week, I am already panicking that there is not enough time to get everything ready.

Packing to travel with kids is a nightmare and stressful at the best of times, making sure you have packed the right clothes not to mention enough of them and making sure you have things for them to do on the journey are just some of the things parents have to think about.

Packing for a child with Cystic Fibrosis only adds to that stress, so many additional things to think about can make it hard work. I find I am wired until the minute we actually lock the house up and set off on the road.

Admittedly things have gotten slightly easier now that Chester is on a break from two of his nebulised antibiotics and the fact he is mainly on tablets and capsules instead of the liquid medications.
From our first trip abroad!

I must admit I am incredibly impressed that someone so small can swallow tablets like he does without a care, sometimes swallowing as many as 9 tablets in one sitting. Tablets makes the worry of having to use ice packs, cool bags and fridges somewhat easier.

Trying to work out how much medication to take is always one of the stresses, I like to take enough that if a bottle is lost or in the case of the liquid ones, knocked over, we don’t have to stress ourselves out with an expensive and difficult trip to the local doctors for more meds.

Then there is the question about which back up antibiotics to take ‘just in case’. CF likes to be unpredictable and I like to be prepared so we have our back ups on hand most the time.

With all this in mind we have to plan ahead so we can get the repeat prescription in time because you can bet your bottom dollar the time you need it ready on time, there will be an item out of stock and left owing which can mean traipsing around town trying to find a pharmacy with the item in stock.

We then need to think about his equipment, making sure we have the nebuliser and spare parts, plus his Physio items like pep mask and blowing activities to keep his lungs active while we are away. CF doesn’t take a holiday so no matter where we are in the world his treatment doesn’t stop or change, we just have to adapt timings to make it fit with our holiday plans.

We have been known to do his percussion on the Chunnel in our car, sat on a sun lounger next to a pool and whilst chilling under a sun brolly on the beach in the south of France. It has to be done no matter what and we have become used to the odd looks we get whilst “beating” our child.

With Chester we have to remember extra changes of clothes because of excessive sweating and leaky nappies, extra salted snacks due to salt loss and in extreme temperatures we have had to make sure we have a prescription for sodium supplements just in case he refuses salted foods or snacks.

We have to make sure we have the right insurance which covers every thing we need, replacement meds, medical expenses and medevac to the UK if required and we always carry his Med docs including latest clinic report and contact details for our team back in the UK just in case.  As you would expect of a military mum this is all filed in order in his designated CF folder.

Our holiday has already been planned and prepped around what Chester can and can’t do safely, we have evaluated risks and have looked at activities that are safe for him. We have already carried out an online recce of local doctors, hospitals and respiratory units and have even checked the local respiratory doctors online CV out. Some may say this is over the top but in my line of work I have to be organised and this organisation is mirrored at home.

Once Friday comes and the front door gets locked I will breath a sigh of relief that we managed to get on the road and will be hoping that all the important stuff has been packed and that I haven’t forgotten anything.

Then when we arrive and I’m sat sipping my large glass of chilled wine I will able to relax and start enjoying my holiday.

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