Additional Needs

When plans get cancelled, again and again

Posted by Emma Louise Cheetham on 21st November 2019 Additional Needs, Advice & Support, Disabilities

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At the beginning of last week, Jaxon was unexpectedly ambulanced in to hospital for an uncontrollable seizure.

Whilst there he was admitted and treated for a suspected chest infection and placed on airvo for three days.

It was a week full of planned days out. It was the most packed week I’d anticipated since Jaxon had been discharged from hospital in August.

I was looking forward to getting out and about with him, doing normal things. Another hospital admission wasn’t even on the radar.

Jaxon has overcome several colds without any medical intervention of late and he seemed to be doing okay.

My mood took a real knock when I discovered he’d be admitted for at least a few days and I realised just how difficult it was going to be to make plans in the future, especially around this time of year.

I sat in the same hospital environment that we spent last Christmas and the majority of the summer this year, thinking about everything we’d missed out on and the things we may go on to miss out on in the future.

We missed spending Christmas at home, we had our Christmas Day in January but it wasn’t the same. We missed out on all the summer fun, the family days out, the walks in the sunshine.

Life just passed us by whilst we were sat staring at the same four walls of a plain, boring hospital room.

I felt sad, I felt angry. I argued with the nurses and doctors about the fact we were stuck in there again. I wasn’t convinced that Jaxon needed to be on airvo given that his sats were stable, his chest x-ray had come back clear and his bloods were all fine.

But my energy resources were entirely depleted. That place has that effect on me.

The same hospital where all this started. I’d rather spend as little time there as possible, not to mention I worry about the effect it has on Jaxon.

I had to go along with what they advised though as they’re the experts and they’re supposed to know what’s best.

It got me thinking though whilst I watched the hours pass me by as I sat by Jaxon’s hospital cot.

How do parents and families of children with complex needs deal with the disappointment when plans are compromised because of their children’s medical needs? How do they plan holidays and days out when they know there’s a strong possibility they could be cancelled?

It goes without saying that my child’s health comes first above everything else and as long as he is well then ultimately, that’s all that matters.

I would never compromise his well-being for the sake of a day out, I’m the first to say he needs to go to hospital when it’s obvious that he’s struggling.

But there is so much about our life that is different to the families of typical children the same age as Jaxon. Sometimes I just want us to feel normal. For just one day, maybe even one week, just for a while.

It’s difficult enough that when we go out I have to make sure I pack his feeding pump or that if I want to get him out of his pram I have to be aware of his lack of head control and core strength, as even at one year old he still needs full support for a cuddle.

I have to be aware that he can’t enjoy the world around him like other children his age due to his visual and hearing impairments.

But that doesn’t stop me wanting to try to get some enjoyment out of this life we’re living.

So understandably I was disappointed.

The irony of it all was that Jaxon was discharged from hospital on Friday night, just after all our planned trips had passed.

Typical. But we went home, got into our Children in Need onesies and had a night in front of the TV.

I still felt sad about everything we’d missed that week but I was glad to be in the comfort of my own home once again, with my boy by my side.

If I could wrap Jaxon up in a completely disinfected bubble I would, I’d do anything to keep him at home.

To keep him here with me and not in a strange place, albeit not that strange anymore given that he’s spent almost half of his short life there.

It’s the worst time of year for kids with complex medical needs and compromised immune systems.

Everybody gets poorly in one way or another because of the change in weather. But for our kids it can result in a month in hospital on airvo, CPAP or even mechanical ventilation.

It’s a frightening time of year. Jaxon was only a few weeks old this time last year so he was more vulnerable then, but that vulnerability is still very much there, it’s still very much real and it has to be at the forefront of my mind day in, day out.

So, what do we do? Let the world pass us by, not make any arrangements for fear of the difficult emotions that come from them being cancelled time after time?

Or do we make plans and try to handle the disappointment as best we can when they don’t come to fruition?

Just accept that this is how it is and one day, hopefully soon that we might be able to enjoy something without it being ruined by a hospital admission or another illness?

In all honesty, I’m not really sure. I guess we have to do what we’ve been doing until now. Take it one day at a time, prepare for the worst and hope for the best.