Additional Needs

We need a Plan B, C, and maybe D

Posted by Sarah Kay on 25th March 2019 Advice & Support, Disabilities

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The other week, we had a power cut. Nothing overly exciting, it seemed that our half of the road was affected and we were without electricity for about an hour.

We lit some candles, had a chat (no wi-fi so no Facebooking!), and before we knew it we were back up and running.

Must have just been a blip and I thought no more of it.

Until a few days later, when the power went off again, but this time it stayed off for ages.

No biggie that we weren’t able to put the lights on as it was the middle of the day.

Not a major problem that we couldn’t boil the kettle for a coffee (although many of you will understand that caffeine can often be considered as critical!).

What was a problem was Heidi’s equipment.

You see Heidi comes with extras. Extras that need power! She has a tracheostomy so needs suction, sometimes going through 100 catheters a day, so her suction machine is constantly on charge.

She is gastrostomy fed and has a feeding pump, which needs charging up (now we could do gravity feeds, so no power needed, but I’m keeping it on the list for the purpose of this blog!).

She is non-mobile and getting big, so we have a lift, that is electric – although it will bring you safely down if the power goes off whilst you are up in it, it’s a one-trip only ticket.

So, we sat, huddled around a gas stove and some tea lights to keep warm (only kidding, it wasn’t that bad), and decided we needed a plan.

We had a battery pack as a Plan B for the suction machine, but what happened if that ran out?

We could charge it up in the car… I had visions of driving around randomly for hours just so we could suction when needed!

Of course, this all sounds dramatic – I get that we were only a short distance from people who did have electricity, in fact, our hospital isn’t far away at all so in a real emergency we could always go there, but it made me think just how much we, like other families in our situation, have to plan.

If we go out, and I forget something for myself, then generally I can either manage without it or nip to a shop to buy it.

If Heidi needs something though it’s completely different (unless it’s the basics like nappies, but even that will become more challenging as she gets bigger).

As a result of this, we pack like we are leaving the country for a month – we have spares, and our spares have spares… but where do you draw the line?

You can’t plan for every eventuality, but if you’re like me you can certainly try!

Oh and just to reassure you – the power did come back on the same day, disappointingly just before we were about to order our “emergency” takeaway!