40. PEG feeding

A very nice lady from Homeward came to visit, bringing my Infinity feeding pump, stand and accessories, and showed Jo and I how to use then.

Within fifteen minutes we are both confident with it's operation and she is happy to bid us farewell. There's instruction manuals, a quick guide, phone numbers and help lines so every eventuality is covered.

I have half a dozen 1.5 litre feeding bags, with regular deliveries scheduled for as long as I need them. The bags hang from a plastic stand that's about waist height and run into the auto pump, and a long tube is coupled from the pump to the PEG tube in the tummy.

The Infinity Pump

The dark purple loop fits into the pump

Once programmed and 'on' you can go about your daily business uninterrupted. It's even possible to pause mid feed which is essential as it takes a 1.5 L bag at least eight hours to empty. Most people run their's over night, not me.

I don't know what it is made of but the stuff in the bag looks like gravy and by the time I've got 1.5L of it in me I'm full. The slightest bit of "wind" brings a bitter, acrid, sulphurous taste to the mouth.

I finish a feed and a little later go to bed, burp, and have to run to the bathroom to throw up 1.5 L of this vile liquid. That in itself takes a minute or so and a good half a dozen or more convolutions and retches. All this of course while my throat is so sore, raw and tender that I don't even swallow my own saliva and am on a constant regime of Co-codamol and Morphine, it's excruciating and exhausting.

This happens three times in the first week. I decide to manually inject the Nutria "milkshakes" through the PEG. That was always an option, it has to be done 8 times a day, but is far more acceptable than the alternative.

The "milk shakes" have the usual variety of flavors, I drink them now with no difficulty. All the flavors are slightly wrong. Banana-ish-flavored-milkshake-style-drink-substitute. The "forest fruit" ( milkshake-style-drink-substitute ) is very 'sour' and I have no idea what the chocolate flavor ( milkshake-style-drink-substitute ) tastes of except to say it sure as hell isn't chocolate.

Having said all that, it's kept me alive, and the delivery man as a matter of course brings the crates in and carries them up the stairs to my flat for me.

Eventually "Tubie" is being used for all intake, feeding Hydration and pain management. It requires "flushing" with inert water (boiled then cooled) before and after every use, this also takes care of hydration.

"Tubie" cleaning and maintenance 

Once a week the "wound" needs to be cleaned and Tubie "reset". This involves unclamping it from the tummy, pushing 2 cm of tube into the belly, rotating the tube 360˚ then pulling the tube back out until its internal "washer" is flush to the inside of the gut. Sometimes it stuck to the inside of the gut wall and the outside length of tube would rotate 180˚ - 270˚ before the inside would release its grip and spin around to catch up, that always made me shudder.

A couple of strips of tape stop "Tubie" from unceremoniously dangling where it ort not.