Not life as we know it

Chips (BE), French fries (AE), French fried po...

We’ve been in the hospital for a week now. It’s the longest Lil Z has been hospitalized, even when she was born. Spending time in the hospital is a strange experience. Time suddenly has no meaning. You have no idea what is happening in the world outside the ward. You feel a bit like an animal in the zoo, with consultants and their flocks of students observing Lil Z’s progress, or lack thereof. You have no privacy, as even in the middle of the night, nurses are creeping into your room (which, unless you’re really lucky, you’re sharing with one or more others) to do obs. Rebellion involves bringing a cup of tea into your room instead of drinking it in the parents’ lounge, where you’re supposed to. Meals invariably involve frozen dinners (the parents’ lounge fridge is full to bursting with Lean Cuisine) or toast and tea (which are provided for free in the parents’ lounge).  And you have no guilt about eating all the chocolate chip cookies you’ve stashed next to Lil Z’s bed or having chips and a latte for lunch.

People are kind and sympathetic. Parents give you understanding smiles as you trudge into the lounge to make another cup of tea or pace the corridors with a fussy child. You have brief conversations with them about how their kids are doing, but never go into too much detail as everyone is weary of recounting yet again their symptoms, worries and sleepless nights.

The highlight of every day is the visit from the consultants. Lil Z is visited daily by Paediatrics and Neurology. I’ve grown quite attached to the two registrars looking after her – especially as they’re the ones who will stay and chat, whereas the consultants themselves only have time to pass through. The Paeds Registrar is brilliant with Lil Z, letting her get used to him before starting her exam and letting her roll around while listening to her chest, rather than holding her down (which gets her very frustrated). The Neuro Registrar knows all sorts of random details about my life now, and is my hero for stepping in and taking over when Lil Z had a seizure here.

The nurses, however, are the ones who make or break your day. The good ones are awesome and can keep you going. For example, Nurse Chris, who “specialed” Lil Z after she was given a whopping dose of Midaz to stop her second seizure. She was also the one who helped me bathe Lil Z when she was in meltdown after her first seizure. Or Nurse Jess yesterday who celebrated the 15 spoons of puree Lil Z had eaten. And Nurse Ashton, who patted my back while I cried when Lil Z was still screaming 5 hours after her seizure and I was at my wit’s end. The bad ones aren’t necessarily bad, but can be annoying. For example, the nurse who kept coming back with more things to disturb Lil Z on a night when she very obviously needed her sleep – keeping her awake until after 9pm. Or the nurse who was obviously jumpy about seizures and kept thinking that Lil Z’s normal jerky movements were another fit.

So, here we sit, bored and fed up with hospital life, waiting for the Neuros to come and declare if we can go home or not. I’m keen to get home, but the time in hospital has been oddly comforting, perhaps because it has been a week where I haven’t had to worry quite so much about Lil Z because whatever she needs, she will get, whether it’s a NG tube, IV fluids, or a quick response to a seizure. And maybe, I’ll just about have time to get some chips before lunch before the Neurology rounds…

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2 responses to “Not life as we know it

  1. Just catching up on the roller coaster news. Not sure why I say this but I find it hard yet interesting to read about the short term and then step back and think about the longer term. There are the day to day problems and yet she keeps on growing up! You are a star (although you have not delivered my pumpkin pie tonight?).

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    • She’s definitely growing up quickly and I think there is a degree of stubborn toddler refusing to eat in all our problems, as well, which is quite normal for a 19 month old!

      Jump a plane to Brisbane for our Thanksgiving Party – there will be pumpkin pies as far as the eye can see…

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