Hospital life

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.

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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 Β£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.

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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.

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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.

 

9 thoughts on “Hospital life”

  1. It is funny how different hospitals operate. Up here, the cf kids do not get access to playrooms. But on a positive note, we get free parking and free interactive tv, invluding netflix!

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      1. I find TV is a mixed blessing. Keeps 7yo gs happy but drives me insane. Cartoon Network, anyone? Seemingly endless repeats of every programme. I have to remind myself that it’s only at the hospital. We’ve told the gks that ‘our TV ‘doesn’t get kids programmes’ 😜

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  2. Hi Emma. I can relate to everything you’ve said. It’s really difficult when your child has to keep away from others with CF. Does the playroom have anything you can take to your room for Chester? We can get DVDs and DVD players on loan, and the play staff might be able to provide activities? Or even take over from you for an hour so you can go outside for a break or just sit in the cafe with hot coffee? When I was trying to keep my gs happy we had a bowl of water on the floor for him to play with and a hospital bedcover spread out underneath it to catch the drips. Sheets are also good for making dens with. I often kept the sheets which would have been on their way to the laundry for play times, so long as they were just used rather than dirty.
    The dietician would probably be pleased that you are finding food Chester will eat so no need to smuggle in that Happy Meal. I find that my gs loses his appetite when he’s on IVs and it becomes really hard to get the calories into him. Can your dietician arrange for a cooked breakfast to be sent up for Chester? Gs had ‘2 bacon’ every morning during his last stay.
    I hope the rest of your stay goes well and you’ll both be home soon.

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    1. Those are very helpful tips thank you. We are now managing to get out for the duration of the day once his morning IV has been done so not so bad now πŸ™‚ we are lucky and get to take toys back to the room Chester just likes to be out the room 😫 Hopefully the next week will fly by πŸ˜‚

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  3. Thanks for your post, Emma! Your words describe our hospital stays to a T! My 10 y/o son WCF is going into the Radcliffe for a month of toxic IVS. I’m trying not to think about the logistical nightmare that it’s going to be. We have a 12 y/o to consider and a 2 hour round trip if we want to ‘pop home!’ All the best 2 u and yours x

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  4. Hi, this post came at the right time. My 6 yr old has just been discharged after 2 weeks and it was hell! She was admitted to a hospital over an hr away, first time in and we were both very home sick. The hospital wasn’t great, the TV was a rip off and the food was terrible… Luckily there was a burger king and a Costa. Thankfully she’s a hell of a lot better now but the disruption was immense, I have an older child who I didn’t really see for days on end… Cf sucks.

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    1. It really does suck I always feel torn between my two it’s so hard to make sure the both get time with mum. Sorry it wasn’t a good admission if there is such a thing. Keeping everything crossed that it’s a long time before you have to do it again πŸ™‚

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