Things out of our control - hospital stays

Ceri-Ann Brown by Ceri-Ann Brown Additional Needs

Ceri-Ann Brown

Ceri-Ann Brown

My name is Ceri-Ann Brown and I live in Stockport, Manchester. I live with the love of my life Phil, my amazing daughter (Amy-Rose) and my giant gu...

Things out of our control - hospital stays

I had my first panic attack for a long time this morning.

I always feel so silly afterwards.

Sometimes the lack of control we have over so much in our lives really gets to me.

We had our first hospital admission in over a year recently. We got home yesterday afternoon after a weeks’ admission.

We work so hard everyday to try and avoid hospital.

The one perk to the pandemic has been that Amy hasn’t caught the colds/flus that tend to land her in hospital.

For a few days Amy’s breathing hadn’t been great.

We had been doing regular nebulisers and suction in a desperate attempt to prevent it becoming an infection.

On a Monday I took her to be seen in hospital.

They diagnosed viral induced asthma and sent us home with an inhaler plan.

Setting alarms for every 4 hours including through the night is enough to wipe me out physically and emotionally but we persevered hoping she would soon feel better.

We got to Wednesday evening and she spiked a very high temperature, had increased work of breathing, a tracheal tug, and sounded so rattly and unwell.

We kept her stable overnight and took her to hospital again in the morning. Several bags carefully packed and loaded into the car.

We didn’t need an ambulance this time.

The doctor had a listen and was certain in his conviction that this was a bad chest infection.

Her blood oxygen levels were low so they hooked her up to oxygen and we took her for an x ray.

One thing we don’t always mention in these times is that not only are we worried for our child and emotionally depleted - we have the very physical job of constantly lifting in order to get an xray.

With non mobile children there is a big expectation that in order to weigh her we sit with her on the weighing scales then without so they can work out the weight.

This combined with constant repositioning in the bed and leaning over to do nebulisers/pad changes etc, and my back is in pieces.

“Look after your back” I am constantly told, by pretty much everyone.

But I’d love to see how everyone recommends we do this in this setting.

That evening she needed airvo (humidified oxygen), two hourly nebs of both kinds, along with good positioning and suction.

A cannula was inserted for antibiotics.

It breaks my heart every time seeing the struggle to find a vein and having to put her through this yet again.

That part never ever gets easier.

It’s a means to an end, a necessary intervention; but does she know that?

Due to the pandemic, Amy’s Dad is furloughed.

This meant we could share the hospital duties and could take turns to get a real sleep at home every other night.

That night her blood oxygen became dangerously low.

Her airway started to close. “The pneumonia has infected her airways” the doctor told Phil.

They planned a transfer to the high dependency unit and steroids, but thankfully with a lot of work from the team they eventually stabilized her.

It’s only when I reflect on the words I have written there… “worked on her”, “stabilized” “dangerously low”.

This is our child. This is a traumatic event.

And yet we often discuss these events so candidly as if it were as normal as drinking a cup of tea.

I think so much of what “medical families” (whatever term is appropriate) endure is completely overlooked.

These are the reasons we don’t sleep at night (or one of the reasons at least!), the reason we don’t relate well to the rest of the world sometimes, the reason we detach or otherwise act differently to how we used to.

Seeing your child turn blue should not be a fairly usual occurrence. And this is what I struggle to grapple with. Just the unfairness of it all.

This chest infection was unpreventable.

Even undetectable until the last moment.

I am glad we took her in when we did, but I don’t like living in that state of heightened alert, watching for every little change wondering whether to get her checked out or not.

If we took her in over every little concern, we would never leave the hospital and that would be ridiculous.

I try to accept that our normal is a different normal, and to accept that there is a lot out of my control… but at the same time it hurts.

I don’t do well when we are in hospital. For some reason my eczema and sinuses kick it up about 10 notches the moment we step into the place.

My hands bleed, my eyes swell up and go red.

So as well as everything else my body seems to reject the whole thing and I become unwell as well but not in a position to recover.

The hand issue this time wasn't helped by a cdiff flare up involving about 10 nappy/clothing and bedding changes per day.

I don't know how nurses and doctors do it! I would have no hands left working there.

Only one parent at a time is permitted into hospitals here at the moment.

This makes meal planning a bit tougher.

We’ve been living on crisps, sandwiches and chocolate for the last week and my body is crying out for nutrients.

I keep promising myself that next time we go shopping, I buy a load of veg and salad items.

They say to be well and energised you need to eat well, exercise and get enough sleep. Those are 3 tricky things when in hospital.

I take my hat off to all of the families that are reading right now and thinking “wow, we are in hospital literally ALL of the time”.

I realise that there are so many out there that could only dream to be in as much as we are.

But I really feel that we are all in this together and that struggles are struggles irrespective of “who has it worse” and so on.

I spend my life in constant awe of so many of the families we have met through Amy.

As an outsider looking in I am amazed at how you plod on.

I know you have no other choice, and that if I were you I would do the same.

But you make it look easy, one thing I know I don’t do!

I hoped when we returned home yesterday that Amy would be thrilled to be out of that same room, and back home.

But instead she was ripping at her hair, crying, shouting, and being generally inconsolable.

Even when things are our “normal” and stable, the daily behaviours and challenges we face can be quite extreme.

I know the best thing to do is to breathe through it, stay calm, be patient, and not take it personally.

But I did feel a pang of sadness in my heart that she was so unsettled all of yesterday.

I hope that in time we find ways to help her communicate so we know what can be done to help her.

I do also fear that actually this is just how it is - the neurological irritation will cause her to act this way long term, and that actually she isn’t going to change and that really it’s me that needs to change and learn to cope better with the difficult situations we often find ourselves in.

Sure, I can meditate in my spare time, or go for a walk, or talk to a friend.

We all have our coping mechanisms.

But sometimes, you really just need someone to agree, yep.. What you’re feeling is normal, and no it isn’t fair.. I’m not going to try and fix this, or give you unsolicited advice… I am just going to be here with you, non judgmentally, and that’s it.

You’re not alone.

I think all I want in life is those around me to be happy, and know how loved they are.

And to have had sufficient sleep to function. It shouldn’t be too big an ask, but sometimes it is.

One day I will make my peace with that, I hope.

Moping and ruminating doesn’t get the washing done, the phone calls answered/appointments attended/forms filled out, the meds drawn, the supplies stored away and all of the rest of things - but sometimes I think it’s okay to not be okay.

I am truly blessed in my support network.

I know a lot of people care about us and are rooting for us, and even on the gloomiest days that isn’t always enough to pick you up.

I am so thankful to everyone in our lives, to those who care, and to those who continue to inspire me on a daily basis.

I am grateful most of all to Amy, who puts up with so much (including me) and to Phil who is equally as responsible and capable as me… but does it all with the patience of a saint.

They both make me proud every single day and make me strive to be a better version of myself.

I typed this blog whilst sipping a camomile tea, trying to steady my breathing and calm myself down.

I had got ready for the day on a day where I really didn’t want to.

I endured my panic attack… and I know that tomorrow is a new day… I don’t know what that day will bring.

Or even how I will respond to it, but I know that I should be proud regardless… and you should be too.

* special thanks to our local hospital and respite centre who managed to supply a safe bed for our stay and also have one on order for the hospital. You have no idea how much this means to us.

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