No, not types of Image file… types of feeding tube…
On Monday 27th November 2017 I went in the John Radcliffe Hospital to get a PEG feeding tube fitted. It was a precautionary move to get the operation out of the way while I was still healthy so it could heal. I wasn’t planning to use it straight away – at the moment I am on a soft diet and still could go to blended or liquidised diet before I had to think about getting fed from a tube directly into my stomach.
In August I had to give up bread as it wasn’t going down so well… and November I moved to full soft diet except crisps which seem OK (bizarrely) and recently I had a run in with a chocolate covered raisin. Just last week a bit of cake gave Dan a bit of a fright as I choked in the kitchen – it was supposed to be a quiet fridge raid – but as I said at Dan at the time “it was worth it”.
My Speech and Language Therapist, talks about taking risks and getting the balance right between quality of life and taking no risks at all. She’s pretty smart and I think I’ve got the balance about right.
Anyway, for the PEG insertion they starve you the night before and then you’re taken down on your bed to the Endoscopy suite. You wait, watching the other guys ahead of you coming round in their beds, thinking I hope they’ve not had what I’m having. And then you have the “walking wounded” – looking pretty good and just waiting to get picked up.
Me enjoying the peace and quiet on the ward:
Eventually they take you through and inject something in the cannula that makes you feel really happy; they don’t knock you out, just sedate you. You don’t remember a thing and don’t feel any pain. A few seconds later it seems you’re coming round in the waiting area and then you’re taken back to the ward on your bed. The journey back seems a lot quicker that the journey there – I guess you’re still under the influence of the sedative.
One more night of peace and quiet on the ward, (maybe the sedative is still working its way round your body?) and then home.
And that’s where the challenge began. I think I told you about emotional lability before, where MND messes with your ability to control your emotions from time to time and you find yourself either laughing or crying at inappropriate moments. Well, with the newly fitted PEG the painkillers were working well, as long as I didn’t laugh. My sister bought me a card that made me laugh so much I had to put in back in the envelope for a few days..
It even looks like me – I don’t know where she got it.
And back at home, everyone made me laugh; Julia’s stories of what the boys had been up to, the boys play fighting and even baby Dexter’s fake coughing he’s just started doing recently caused me to double up in pain.
I had to hide away in our bedroom and ask Julia to stay away until I was asleep. Luckily it only lasted a couple of days.
So now I have this tube going into my stomach. You’d think it would leak, but it doesn’t seem to. At the moment I have to flush it daily and on the 10th day onward I’ll have to twist it to stop the body from growing round the end of it. Fortunately for me Julia teaches nursing assistants to care for people with PEGs so I’m in good hands.
One of the nurses asked me what I was going to call my PEG… so I asked friends on Facebook and got some interesting ideas; I had thought ”Phil” – but I thought it may get confusing with the Phils I knew. Someone suggested Jake as in Jake the PEG – but I didn’t like the association with the crimes of Rolf Harris. Others suggested Peggy and Margaret, a long form of Peggy (and I can just hear Little Britain: “Margaret!”) but my favourite is Audrey, from the film The Little Shop of Horrors, short for Audrey II the “feed me” plant.
Three weeks on and I’m getting tired of Audrey getting caught in my flies so I’ve strapped her up with a Statlock to avoid any nasty accidents. I’m cleaning and flushing her unsupervised every day without any calamitous occurrences and it feels less of an intrusion. Thankfully Dexter hasn’t discovered the new plumbing yet………