Lockdown Diary - Monday 30th November 2020

A 'normal' start to Monday for the first time in three weeks: the day starts with meditation at 7:30 a.m, then yoga at 10. 

It was great to be back at yoga today and to actually be able to do it all, the odd twinge aside. It was made especially good by the return of someone who's not been at the classes since the last physical one, back in February or March (can't quite recall) - we always seemed to get on well and have a good chat.  This, of course, is the downside of virtual meetings, no opportunity to chat.

I had barely got changed from yoga when the carers arrived for the lunch call.  We'd agreed they'd come early as, though my wife was not due at hospital until 2 p.m., transport can arrive any time up to 2 hours before that. In the earlier morning call the carers had dressed her enough for hospital and warmth, but with a night dress that opened at the front for easy access to her stomach. This final call was for meds and water - she wasn't allowed anything after 12.

The ambulance turned up at one, which reminded me I needed to fit the ramps to the front door step, and also was a chance for them to assess their task.  They rapidly came to the conclusion that because my wife can't really communicate, she needed to be accompanied by me. It made total sense and I was confused by the fact they originally said I shouldn't come.

Hastily I got changed to go to the hospital and then set up the ramps with son #2's help. After some argy-bargy with me assisting the crew to get my wife from her bed onto the stretcher - made slightly tricky by the fact that she's about the length of the stretcher - I was sat in the back of the ambulance ready to roll.

I have had so many journeys in an ambulance over the last few years that it seems a familiar environment, the main difference today being that it's not a flashing lights and sirens job.

There's building work going on at the hospital around endoscopy, our destination, so we have to access via a different entrance and take a longer route on the stretcher to enter via the back route, something not unfamiliar to those who work in endoscopy, I imagine.

On arrival we have the first bit where it becomes immediately apparent me accompanying her was the right thing. I had several important exchanges with several nurses including the specialist who was going to perform the procedure. 

This was all explained to me and that afterwards they would show me the new, different style of PEG and explain it to me (all things which would have been pointless with my wife, since she'd probably not take it in, and even if she did, she couldn't tell anyone.

I was sent away to go sit in the waiting room - the one part of the process I wasn't so keen on, in the current circumstances - but that was the only place I could go, short of freezing outside.

After the procedure the specialist nurse told me it had all gone well, though the old PEG had disintegrated on removal, so it was just as well it had been changed today - it would not have lasted another day.  The new PEG comes with new procedures: every 4 weeks someone has to come out and empty/refill the balloon that holds it in place, and it needs replacing every 9 months, though unlike the old sort she had, it can be changed by a qualified person in the home.  I am expecting a call from the dietitian to coordinate the regular visits required to look after/change the new PEG.

All that over and done with, we had to wait for an ambulance to take us home, and though the same 2 hour rules apply, the return ambulance arrives around 3:30 p.m.

We're departing town at a busy time - lots of parents on their way to/from school - so it was a slow-ish journey.  This all-female crew were just as friendly as the crew that took us to the hospital.  Once home I set up the ramps again and we got my wife back onto her bed and made her as comfortable as possible, bearing in mind it wasn't set up as normal because we'd had to remove various brackets etc, in order to use the PAT slide (should that really be pat slide?)  I realise I'm going have to connect the "night" bag to the catheter as the leg bag is almost full, but apart from a few other changes to make her as comfortable as I can, that's all I can do for now. The most important thing is that she is home safe and the procedure is complete.

Just as we'd been about to leave to go to hospital, my elder sister had called, and so now things are settling down, I thought I'd take time out to return her call.

Luckily we have one more carer call today and they can reset her bed and the various brackets to how they're meant to be: as always - and they have had to be really flexible today, doing a lot of extra things - they go above and beyond to make my wife comfortable and to care for her.  When they arrive, they do exactly what my wife needs, give her meds through the new PEG and make her comfortable for the night.

Which reminds me, all the nurses and ambulance crews have been absolutely wonderful today and we both appreciate and thank them for all they do to make things run so smoothly.  I'm always anxious beforehand, but yet again it has all worked out fine.  Much love and thanks for the NHS.

I manage to find time to listen to the rest of Róisín Murphy's new album before it's time to assist son #2 with tonight's dinner.

Watched another couple of episodes of 'Two Weeks To Live' which continues to entertain with its dark humour, just what life needs at the moment.

Back ten years or so for today's tune from Ariel Pink's Haunted Graffiti and the album, quite appropriately titled, 'Before Today'.  It contains a number of great songs, all stamped with the restless inventiveness of the man himself, and from it I've chosen 'Round and Round' 

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