16 Oct, 2020

Limbo x 2 ……

It’s been a long day today, the 15th. I got a good 6 hours’ sleep, awakened only by some damn machine that started beeping.  The nurses are great, though some of them can’t understand me at times – deciphering the Peace Growl can be a challenge.

So has anything happened?

9.30 this morning I told the MND nurse in writing that I would not consent to the jejunostomy.  That was fine, so she continued to try to find a slot for the PEG but with a GA, general anaesthetic, the assumption being that it will deliver a stronger knockout that will overcome my bellicose tendencies – no ‘belly’ pun intended but it does fit quite nicely.

5pm she told me that they’re still awaiting a date. In an earlier blog I mentioned that UCLH allows one such operation per month, so it could be some months before they can fit me in unless it’s classed as an emergency.  No news so far, so I’ve agreed to stay here yet another night.

Briefly, the experts think that the PEG procedure, which uses a sort of torch down the throat to shine through where they should make the incision, might enable them to move the stomach a little.  I don’t know how, but that’s what they think.  And the good thing about that is that they won’t use the knife until they’re sure.  So yet again it can be stopped without breaking the skin.

And, for heaven’s sake, I’m becoming a bit of a celeb.  Nurses, doctors, therapists know the story of the last few weeks.  They tell me that very occasionally they come across someone who starts resisting under sedation.  Even more rarely they meet someone whose organs are in the wrong place.  Never have they seen anyone with both.  Now, being unique – or should that be ‘freak’? – how can I make money out of this?!

The other three beds have filled up. They’d better be careful.  DP the Snore Monitor is on the case!

Nothing more to say.  Except perhaps this anecdote from a medic here who told of another patient who reacted to a form of sedation. Before leaving hospital she was given diazepam, a fairly common relaxant.  In the taxi she took all her clothes off.

4 Comments

  1. bellum bellum bellum belli bello bello… thanks for another reminder of Dad on here!

    And go for the diazepam – could help your celeb fame even more..

    Hope you had an ok night with new neighbours. And that you get clarity on date soooon

    Reply
    • Seriously hope they can schedule in a time for the PEG op to go ahead ASAP Dave, and that you are comfortable until then. You are indeed incredibly unique, and a total celeb in my eyes!!! Lots and lots of love xxxx

      Reply
  2. I’m sure the medics are recognising that you are pretty special in all ways! So glad that they, and you, have made the decision to try the PEG again and hope and pray that a slot can be found quickly now. Not sure how you could make money but you could write a very interesting article for The Lancet in your own unique style! Lots of love, Jan x

    Reply
  3. Hope they agree to do it soon

    Reply

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