Aren’t we lucky to have regular memory updates from Facebook? Lovingly reminding me that this time last year we were going through the exact same thing that we are now, admission, yearly IVs and annual review. In fact, it is the very same thing we were doing not just last year, but also three years ago when Chester was still very diddy and constantly poorly.

Luckily rather than tantrums, I was faced with a child who was thrilled to be asked to get his hospital toy bag ready, now, whilst this makes life much easier that he is compliant and easy going with it all, as a parent, it can also be upsetting, that something most children and some adults would find extremely daunting is just a normal part of Chester’s and our lives. So, with his Iron Man costume on and his Thomas trains secured safely in his carry case he waved bye to Nanny and trundled off to be loaded into his car seat. Literally, not a care in the world and a sense of excitement.

Sadly, admissions have been a regular feature in our lives, and whilst stressful and emotionally draining, the majority have been reasonably straightforward, pleasant and easy. But with every admission I am reminded of the frustrations faced during past admissions and I dread what we may encounter this time.
The first highlight of any admission or hospital appointment, is the walk in to the Children’s department. Carefully dodging in and out of clouds of smoke being bellowed out by the heavily pregnant smokers or the wheelchair bound patients hooked up to their Oxygen.
Now I do not make a habit of judging, but I mean really, common sense! Smoking is their right and their choice; I just don’t see how people can have so little consideration for those needing access. The doors and entrance are clearly marked as designated no smoking areas. I do always enjoy a giggle at Chester wafting the smoke saying “Ewww” or Oakley out right telling people they are disgusting, if a 6-year-old can see it is wrong so should grown adults.
Once inside it’s the other parents I then have to try to avoid, there is nothing worse than being bombarded with questions, “How come you get a private room?”, “How long are you in?”, “What you in for?” to name but a few, some get even more personal than that, and no, it’s ok Jackie, I don’t want to hear about Barnaby’s piles.
Our hospital has an amazing playroom with incredibly lovely and busy play specialists. Our access to the playroom is thoroughly dependant on other CF children on the ward, sometimes we have to work on a rota system to allow all the children access with no cross-infection risk. Time out of his room is precious, keeping a toddler in a side room for long periods of time is hard work! It can be easily ruined by those who think the playroom is where you send the unruly sibling who won’t sit quietly at the bedside. Unsupervised and on destruction mode, it’s upsetting to see someone destroying toys that have been generously donated.
I think the final highlight of any admission is opening the parent’s fridge to eat the labelled Subway sandwich I purchased on the way in, knowing I wouldn’t be able to leave Chester on the ward to get lunch, only to find it gone! Half inched by someone, why would you steal someone’s food? I guess having watched parents filling their bags with the patients sandwiches and jars of baby food, nothing seems to surprise me anymore.
Whilst I am incredibly grateful for the NHS and the staff who look after us every admission, I am even more grateful that they spent time training me so I can manage Chester’s care myself, in the best environment for him, away from the awkward questions and most importantly knowing that my sandwich will still be in the fridge where I left it when I am ready to eat it, unless of course Chester gets there first.

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Published by Emma Hughes
Mamma of two beautiful boys, one a Cystic Fibrosis fighter. Love all things travel, making memories and am living in hope of a cure 🌹
View all posts by Emma Hughes
Beautiful reading xx
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Thank you so much x
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Thank you. X
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