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H is for: Hospitals

H is for: Hospitals

It started with those appointments we unknowingly signed up to the moment we became parents of a child with special needs.

The ones where Paediatricians dish out observations but don’t really do much.

The appointments with therapists of every description possible, from Physio to OT and speech and language to play.

Then the appointments with different specialists as her medical issues unfolded.

The annual pilgrimage to the Geneticist, who lovely lady though she is, only served to scare us even more with her grim predictions and the possibility of yet more medical issues not even on our radar.

There have been a couple of times that we have dashed into our local children’s unit which is just up the road from Lucy’s school. On those occasions I was glad that we go to that ward so frequently the staff know our first names and how I take my tea.

The nurses there are lovely and part of our lives now.

The bigger events, mostly the in the middle of the night seizures, the Sepsis she got at six months old and the string of infections she battled with throughout her toddler years, they all ended us up in the children’s ward 20 miles away from home. Because the one down the road from us is a day ward only.

We got to know these staff too, remembered the names of the helpful ones and tried to avoid the few who were less so.

Staying on a children’s ward overnight is no pleasant experience, it’s noisy, either freezing cold or stiflingly hot and lonely.

On the few occasions where we were kept in isolation and had a room to ourselves, the stay itself was more bearable.

Tucked away in a secluded spot, I’d start to nest build on a small scale, bringing in familiar toys, a blanket etc and try and make it a home from home as best I could.

You simply can’t do that when all that’s dividing you from an arguing family or a child throwing up, is a flimsy curtain.

In a side room you also usually get a fold up bed to sleep on next to your child.

However, on the ward it’s a showdown to get the comfy pullout chair that turns into a very slim sized couch, they are usually pale blue and there is nearly always only one on a four bed ward. Everyone else sleeps uncomfortably on the grey plastic chairs.

The situation was no better when we knew we were going into hospital for planned surgery.

Lucy had three major operations on her hip and thigh when she was age 14 – 17 months old. We had met the wonderful staff before and knew what to expect.

What we hadn’t planned on was us all catching the Noro virus from the poorly little boy in the bed next to us who was violently ill, a lot.

We brought Lucy home in a full body cast which only had a small hole cut out to tuck nappies in. You can imagine how that first 48 hours went!

I’d love to write something positive about hospitals, they are on the whole amazing places covering a huge range of medical issues and little kingdoms in their own right.

But there’s so much more that they could do to make stays more bearable.

I once dreamt up a business idea for a chain of hairdressers and beauticians in hospitals, where patients or their long term visitors or even staff could go to for a little pampering to feel more human.

Back with my feet on the ground and I’ll have to be content with my mini Clarins samples and dry shampoo, both staples for surviving a week on that blue fold down couch!

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sam Bowen

Meet Our Blogger

Hi I’m Sam, Mum to Lucy who is has complex special needs but is the happiest person I’ve ever had the pleasure of meeting! I own Hip-Pose Ltd, a brand of clothing I designed for babies with hip dysplasia (which Lucy had). I’m also a fundraiser for her school PTA and in my spare time (if I get any!) I sew and make crafty stuff.

View Sam’s Profile

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