November – December 2010 – Grandparents!! - 12 Days In Hospital For PEG Operation - Aftermath – Hospital Bed & Hoist At Home

The phone calls started as soon as we got home – Carol needs the PEG fitted now. I talked to Amy and Dr Anderson, and anybody else who’d listen, it was the priority plain and simple.

But there was also some fantastic news to celebrate with the birth of our first grandchild on 5^th November – Veronica Mae was born to Samm and Jim, and a light came back on in Carol’s eyes. There were so many feelings going through me as I sat in that hospital ward with our son and daughter-in-law, a beautiful new baby and my wonderful wife. So much joy – Carol had got to see and hold our first grandchild - but also so much sadness – this wasn’t how it was meant to be. We were going to run around with our grandchildren, to laugh and sing and play with them, to take them on holiday – that’s how it was supposed to be. Carol wasn’t meant to be sat in a wheelchair barely able to hold our grandaughter – I hope you will excuse me repeating that life can be very cruel. But you turn those feelings off and focus on the positives, we had a beautiful new baby in our lives, one that would bring so much joy to Carol (and the rest of us) over the coming months.

So how did it feel being a grandad at 43 – that wasn’t part of the plan was it? Well, what can I say – Jim was the same age as I was when he was born so who’s to say what’s best for him in his life? Jim and Samm are really happy together and are building a life for themselves – sounds familiar - and ultimately as a parent isn’t that what we want for our children? So a grandad at 43 – such is life – looking at yours and seeing a happy family, now that was the plan.

A couple of days later we managed to get over to Torquay to see “Spamalot” which was a really great show – it would turn out to be our last trip for quite a long time.

November passed with Carol’s feeding not getting any easier and then drastic action was taken. An ambulance turned up at the house to take Carol into hospital – this had been arranged behind the scenes to try and jump the queue but nobody had told us. I was certain Carol would refuse to go but she obviously realised the PEG needed to be fitted so in we went.

Now there are criticisms in what I’ll write next, but these are not aimed at the nurses we met. They work extremely hard and do a great job, but quite frankly a patient with the degree of support that Carol needed at that point had to have 24 hour care and Treliske could not provide that. When you’re on a ward with 25 other patients you’re not going to get that high level care. I quickly realised we needed to make sure somebody was sat with Carol all day, to deal with any problems, so we all took turns – remember Carol couldn’t speak anymore so was using the litewriter to communicate. Overnight, when I did have to leave Carol alone on the ward, we used a special alarm sound on the litewriter to call the nurses, as Carol couldn’t operate the bed’s emergency call button – but this regularly went unanswered.

Over the first 4 days Carol was moved between 4 different wards – and she wasn’t fed at all. Despite my protests they’d written in the notes that Carol was nil by mouth and nobody would listen. It took too much time before they actually provided us with pureed food so that we could try to feed Carol again, and those few days had left Carol’s ability to swallow even weaker than it was before.

My concerns about Carol being in bed were also ignored until the 6^th day when a physiotherapist finally turned up. I’d been trying to get somebody to help me move Carol around (using the belt and turntable as I did at home) but she was just left in bed. By the time the physio tried to move Carol she was so weak that her legs wouldn’t work at all when we attempted to stand her up. They had to use a stand-aid, which defeated the whole object, and I realised right there that we’d finally lost what little mobility Carol had left.

Mentally Carol was also getting more and more upset with each passing day. Spending time lay in bed in a hospital ward is no fun for anyone but Carol had more to cope with than most. Everyday we asked when the operation was being scheduled and nobody could tell us – it took a full week before a date was actually arranged, and that was set for what would be Carol’s 10^th day in hospital.

Thankfully the actual operation was a straightforward procedure and Carol was out of recovery quickly. We then had to wait another day before the PEG was used, and the dietician sat with us and explained how it worked. Carol obviously knew all of this, from her nurse training, but it was new to me. As I’d be the one mainly using the PEG it was quite a daunting prospect at the time. However, once I’d seen the feeding / flushing procedure I realised there was nothing to worry about and I was able to practice putting fluids in before Carol came home.

I could see the problems we’d be faced with back at home once Carol left hospital so I’d been talking to Amy about our current set-up and what could be done. A number of other conversations were had and decisions were made about equipment. I had seen that Carol had lost the ability to use her legs so the turntable / belt would no longer work. I was also very worried about trying to move Carol using the belt anyway – as it went around Carol’s torso and there was now a PEG in her stomach, so a hoist was brought in. The current sleeping arrangements couldn’t continue either so an electric bed was also brought in (similar to those in hospital) along with an air mattress for comfort. This new set-up would prove invaluable over the coming months.

Carol was in hospital for a total of 12 days – and that period cost her dearly in further loss of mobility, muscle strength and the ability to swallow food. Once at home, although we would persevere with trying to feed Carol as we had before, the PEG would become the only feeding option within a couple of months.

On the back of all of this Christmas had also come around again – how time flies – and it was interesting to look back and think that just 12 months earlier Carol was still walking around and we’d been about to fly out to Gran Canaria for New Year.

A lot had happened in 2010 – there were some real highs and also some deep lows – but it was hard not to look back on the year without seeing just how far Carol had progressed. I started looking forward at 2011 and wondering where we’d be in another 12 months’ time.