14 Nov, 2020

The new toy ….

Writing this at 6pm on the 13th.  Yes, I have a PEG to play with.  They did it this afternoon.  They seemed pleased, and relieved, and we’re all hoping it’s successful.

There were some uncertainties beforehand, including when they told me they’d be using a deeper type of sedation rather than a general anaesthetic.  We then had a discussion about sedation and my warlike tendencies.  Anyway they decided to risk it, and it proved enough to pacify Peace.

Some pain now but they’re alternating drips through the cannula – sometimes hydration and sometimes paracetamol.  Also some morphine.  It will settle.  I haven’t seen the PEG yet but this evening we’ll test it by injecting water.  Then on the 15th or 16th some training on how to manage it.  I’ll go home when everything’s settled.

So that’s it.  The MND/ALS continues its inevitable journey but at least the urgent need for nutrition without swallowing has been answered: it will all go in through the pipe.  When I’m home I might open the champagne.  That will be interesting ……

I don’t want to overdramatise this, but in truth the last three months have been extraordinary.  I don’t think the medics have seen anything like it before, at least not in one patient.  It’s been serious and humorous – “Nice to see you again, David”, say the ward staff, “and what are you going to surprise us with this time?!”  But they know that increasingly over the weeks the throat muscles have been been refusing to work.  It’s now extremely difficult to swallow and soon it will be impossible.

We’ve made it.  Huge gratitude to the MND experts who are now real friends. Huge gratitude to the NHS for putting me on the operating tables with full medical teams three times in three months in probably the most testing period of its existence.  Quite remarkable.  Now ….. onward to other things, I hope.

Thank you, everyone.  The love and good wishes kept me going.  Thank you.

16 Comments

  1. So pleased David! Well done, and good luck with the PEG. ( Not sure you will be able to taste the champagne, but what the heck!)
    I can get up from my knees now……….worn out praying!

    Reply
  2. Hooray!

    Love from Ann Bell

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  3. Bravissimo! You’ve come through the toughest physical experiences and still emerge with the ability to write clearly, dispassionately and, dare I say it, entertainingly, about it. To say well done seems absurdly inadequate but let’s hope that life is hugely improved by this intervention. You’re a star !

    Reply
  4. Such great news!! And such relief felt by everyone, I’m sure. Huge admiration for you, as well as well as the NHS, for your constant fortitude and humour. Very best wishes for the coming days and much love x

    Reply
  5. All of your blog readets were willing it to be a success and it was! Well done.

    Your Cats magazine awaits you.

    Reply
  6. Brilliant news.. Good old NHS especially in lockdown times.. Friday 13th not so bad then… Good luck David.

    Reply
  7. Wonderful news, must be such a relief for you, no doubt all your Specialists will breathe more easily too. Hopefully you will be more comfortable now and be able to enjoy everyday life again. With love from all the family. Valerie

    Reply
  8. Brilliant news…let me see if I can find some experimental Champagne.

    Reply
  9. Great to see your positive blog, prayers answer for now!
    I’m so glad it worked out and you are able to smile. We are all smiling
    With you here in Monmouth. Lots of love xx

    Reply
  10. You’re marvelous, and I’m sure the medical staff have been happy to have such a balanced, witty, and grateful patient! All the best.

    Reply
  11. David, great news. E & I are so pleased to hear all went well.

    Reply
  12. Fantastic! God save the NHS (‘cos this bloody government won’t)! That’s such great news, David. You must be so relieved. I’m opening the champagne at this end to toast your victory (is that the word?). I look forward to more news about your new little friend, Peggy!

    Reply
  13. So pleased to hear the good news was praying for you all-day hope you will soon be home and back to so normality
    Love Barbara x

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  14. Fantastic news David. So relieved

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  15. It was worth all the prayers – it sounds as if you had quite a few pray-ers rooting for you. On the day we had a big funeral for a beloved member of St Margaret’s, and because it’s the only chance we have of choral singing at the moment, I raised an expert group of 9 singers who sang sensationally for our friend Anne – and I was thinking of you throughout and hoping they managed to circumvent your unusual problems this time! Friday 13th was a lucky day all round.

    Reply
  16. Sorry for the delay, I wrote earlier but was distracted by Mum and forgot to press send! So very pleased the op went according to plan. We had everything crossed here over in Guernsey. I am sure you will master Peggie and keep her in good working order!!

    Reply

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