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Friday, 31 January 2020

Decisions, surgery, caring and coping...

Hi guys, I turned around to draw breath and January was all gone!
How have we faired? Not so well, already 2020 is proving challenging! So far it's been cancelled meetings, appointments galore and enforced time at home.
Treatment decisions...
Coo needed surgery. He wasn't suitable for a general anaesthetic due to all the sleep seizure activity - he has NFLE (Nocturnal Frontal Lobe Epilepsy), effectively sleep seizures so after discussion we opted for a spinal injection instead but in the end, on the day and after discussion with a very kindly surgeon, Coo opted to be brave and go with a local anaesthetic instead! Offt brave guy!
I gotta say, the staff were brilliant at Ayr Hospital, all the arrangements we'd asked for, additional space, the fact I'd need to stay close to keep him calm and also awake as he was stressed and shattered from the additional seizure activity the night before. The last thing we wanted was him left on his own, falling asleep and seizing on the ward!
I can only thank the ward staff, they took everything we said on board, really listened to us and the result was a far easier and less stressful experience for us both!
Well done getting it right for patients and carers NHS Ayrshire & Arran
We got home, battened down the hatches and prepared for the night ahead's seizure activity. Just hoping he wouldn't bang around too much and burst any stitches and we'd cope OK until morning.
I think that's probably the worse bit for carers, it's the stress and the second guessing and the always needing to keep one step ahead in a crisis and just when you think you're home and dry? Bang, a big fat spanner in the works...Coo went into shock, he got the shakes, nausea and his temperature dropped to 35.4C and he felt really poorly.
I know from lots of experience when to call for NHS backup and this was one of those times.
Thankfully with some medical advice and some reassurance too, we coped at home - Coo did not want to go through yet another hospital admission, I wasn't keen either and I felt comfortable to monitor things and just wait it out.
A big cosy blanket, lot's of peace and quiet and a wee cuppa and slowly things stabilised again and we all lived to fight another day!

Caring is never easy that's for sure but it's never boring either! Here's hoping for a more settled February!
Keep strong
Maz x

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