We flew out for our first holiday in a few years just over a week ago; the kids excited, us hopeful for a relaxing time. The week was, turbulent to say the least - and I’m not talking about the flights.
We’ve never tried a family package holiday, but given the limited time we had (after Isaac had recovered from his last surgery, but before his next need for IV antibiotics) and funds, we got a late deal and headed out to beautiful Cyprus for the first time.
On arrival, the hotel was…. OK. The pools were fantastic, the beach, less so. The food was good, the rooms, less so. But nothing that we could moan about - and the first few days we swam, ate and enjoyed the luminescent sunsets.
Until the hotel caught fire.
The kids and I were lazing in bed one morning, while Dan was at the pool. The first thing we noticed was the Wi-Fi not working (ironic that), and then that the power was off altogether. Checking the corridor, we found it dark and filled with smoke. No fire alarm. No smoke alarm. No emergency lights. No one warning us to evacuate. We stayed pretty calm (Rosa was understandably anxious) and felt our way down the dark corridors and stairs to the pool outside, where everything and everyone was acting …. normally?
I realise you don’t want to panic people, but to leave them unknowing when children could have been left inside asleep, inhaling smoke? It felt like the whole world gone mad. When the smoke could later be seen bellowing from the top floor windows, finally word spread and they started to evacuate the building, but that was maybe an hour later. The hotel manager was trotted out and announced that the fire was under control, had started in the laundry, and while we couldn’t go to our rooms, we could enjoy the pools while they checked the building. With no power, we could only drink from bottles and there was little food. The toilets stopped flushing, and too late, we realised that the pool filters would also be off. I’ll come back to that point later.
An hour or so later, we were told the power was not coming back on, and we would be evacuated to a new hotel for the night. The impeding chaos would have been comical, had it not also been so stressful and hot (…no air-con, hundreds of frustrated or anxious people, potentially hours of waiting). Fortunately, we were in a taxi not too long after, enroute to our new hotel.
When we arrived, the girls were jumping up and down ecstatic. 5* hotel, a whole suite to ourselves (three bathrooms, three balconies, three huge rooms) - and before long, they were were gowned up and the anxiety of earlier was lifting from our shoulders.
The second half of the holiday was a mix, best described as anxiety in paradise.
On one hand, the hotel was incredible, wonderful staff, food, pools, a beach a few steps away (we were in gorgeous Paphos), where we snorkelled for hours. On the other, we had no idea who was paying for this and were threatened daily with a return to the original hotel, which we had serious health and safety concerns about. We spent half the time enjoying the time we had there, and the other with the staff in reception trying to sort things out. The holiday was all-inclusive (our first) so we had no funds for extras, as we didn’t think we’d need any, but this hotel was not. The worry of all of this made it hard to relax and enjoy anything.
But much worse, Isaac was becoming more and more sick each day. He was vomiting and had a rash (which is when we started to worry about the unfiltered pool he had swam in, which is a bacterial bath for anyone, but particularly risky for people with CF) and his chest was filling with mucous. He was pale, tired, not eating, and despite the heat, curled up on the sofa in covers. We contacted his CF team back home, but couldn’t get hold of them, and knew that seeing a doctor locally would be likely fruitless, unless we could access a CF doctor, or at least a respiratory one.
We started our extra back-up antibiotic.
I’m often asked about his intense use of antibiotics. He takes one orally and another nebulised directly into his lungs each and everyday. We also have the option to add a second oral one when a CF exacerbation begins, and IV antibiotics when none of those work. Yes, global overuse of antibiotics is a critical health issue, and one I have posted about before (see here for one) and feel very strongly about. But the breeding ground for bacteria that the CF lungs are, create an exceptional case and should be treated very aggressively, early on, with as many antibiotics that it might take to treat what we know are in those lungs, and possibly those we don’t know are there, but fear might be. Second to that, I am asked about becoming immune to antibiotics, and yes, this is possible, even probable. It is not the person that becomes immune though. It’s the bacteria that the person lives with that can become immune by mutating, and this is too a very critical issue and concern. However, in CF, while we do all we can to reduce this risk, we also need to use the arsenal of antibiotics we have to their best affect, as quite simply, to not do so, could risk death. So if you ever question why we jump to antibiotics so soon, this is a very specific CF treatment plan (right now, our only plan) and not one to be used for healthy people.
The next couple of days panned out with us finally being allowed to stay at the second hotel (hallelujah) but also having to pay for that stay (we are assured this will be refunded, but still fighting for this to happen). Delayed flight home, we finally arrived home at 4.30am. While we were weary, Isaac was a thousand fold more so. After some sleep, we tested lung function (significantly and alarmingly low), O2 sats (OK) and collected sputum for the lab to test. We’re now discussing with his CF team the best plan, which is almost definitely more IV antibiotics. We are also to keep a new medication in stock to treat lung bleeds, as this can be risky, and his sputum now is blood streaked (likely due to inflammation, rather than haemoptysis).
If there is any silver lining to this, it’s that Isaac has started to admit that he needs to adhere to all treatments more consistently - for Isaac to even admit that he feels unwell is big, let alone that he agrees to needing treatment - that is a big step forward. I guess he is learning all the lessons that I never wanted, but always needed him to learn.
My kids are all, simply amazing. More soon x
Cystic Fibrosis is a life limiting, genetic condition, affecting some 10,000 people in the UK alone. CF sufferers often, as a last resort, need to trade in their damaged CF lungs for the lungs of a generous stranger. To sign up to support organ transplantation, please visit https://www.organdonation.nhs.uk/ and tell your loved ones of your wishes, as even when signed up, the decision becomes theirs after death. Thank you.
