Trying to entertain a toddler in a hospital ward is a nightmare, even more so when another patient with Cystic Fibrosis is admitted and you are confined to your room for most of the day. Time in the playroom is split using a rota system and you can almost guarantee your child will be asleep when it’s his turn to escape to the toy zone.
In the event you manage to make it to the playroom you daren’t risk taking your eyes off your child who is poised in striking distance of the little boy who just stole the Thomas the tank book from him. Watching helplessly as you are too far away to stop the mighty splinted and bandaged boxing glove hand from striking it’s intended target, the Thomas the tank book thief. If you aren’t dealing with that you’re being asked the same question “What’s he in for?” I hate this, I find it rude, how about mind your own business.
Admissions mean getting rinsed of cash firstly so that Chester can watch frozen and other Disney films such as Inside Out whilst having physio (anything for an easy life and sometimes the only things he will lay still for) and those movies don’t come cheap at £15 for 3 days! Secondly paying expensive parking fees, even with a concession it’s a fair bit and lastly but most the most important outlay, copious amounts of coffee! Let’s face it coffee shops in hospitals are never cheap!
I find I have to kiss goodbye to any kind of routine, and being a military mum this does not come easy, we, or should I say I, do not do well without my routine and timings. I run a tightly organised and scheduled ship but that all goes wrong the minute we come in.
Trying to get Chester to eat can prove difficult, he does not appreciate the culinary delights served up in hospital so I often find myself smuggling in McDonalds like I’m trying to smuggle a shank into prison, all just to get those calories into him.
It’s also hard to get Chester to sleep during the day, and if he doesn’t nap he’s a real ratbag, you can pretty much guarantee the minute he finally gives in and nods off someone wants to come in and do his blood pressure or take his temperature, it’s typical. There’s no worse sound than hearing the ward round nearing your room when he’s just fallen asleep, especially when I am so excited that I may get to drink my cup of coffee while it’s still warm.
My days are spent comforting Chester as he screams everytime he sees the cannula in his hand, running after him as he’s running away from nurses and physiotherapists and clinging onto him with all my strength as he practices his crocodile death roll to aid in his escape from my clutches.
Boredom kicks in and fatigue follows, and I can’t even get excited that it will soon be bedtime because not only is the pull out guest bed with the paper thin mattress and plastic cover really unappealing, knowing that the nurse with the flashlight resembling a lighthouse is on duty and will be in soon to do his IVs in the process blinding Chester and waking him up.
Getting out for “day release” as we call it is a godsend, 14 days is a long time to be trapped in hospital so luckily when Chester is well and in for planned IVs we can escape for a few hours in between, which allows for a little bit of family time and normality at a time when everything is less than normal.
I have had to get used to this way of life as has the rest of the family and although it’s tough I am always amazed at how resilient Chester and Oakley are and how well they cope with the disruption.
I am also amazed and humbled at the kindness of others who make it possible for special holidays like Christmas and Easter to be celebrated in hospital.