Feeding tube hacks!

I have a PEG feeding tube and it has given me my life back, but it isn’t problem free. I’ve written about tips before but of course I’m always learning new things so I wanted to do another post.

Storage

You can end up with a lot of equipment – bags of feed and water, syringes, tubing – and you may not want to pile boxes up in the corner of your bedroom or lounge…

I have a set of beautiful wooden drawers that store my smaller bits and pieces such as the syringes and spare parts. In a kitchen cupboard we store tubing and a week or so of feed and water bags, the rest of which we keep on a bookcase and in the hall cupboard. I like to have nice storage as it makes my flat feel less medical but talking of which…

Medication

We have two peg baskets, one for morning medication and one for evening medication, the points in the day when I have most medication.

I discussed how I use a pestle and mortar, tea strainer and medicine pots in my previous post so I won’t expain that again. One addition is a small tea tray that we use to carry the prepared medication from the kitchen to wherever I am in the flat. An alteration we have made is that when we leave the house, we no longer use the soup cups to take flush water as they started to leak a lot. Now we use small kids drink bottle, if you’re looking to find something, think about having a wide neck so that you can get to the water more easily.

Bits and bobs

Since my last post, my PEG has been changed and has a little more discharge than it used to so I have started using tubie pads from etsy. I also forgot to mention the value of pliers! Every so often the giving tubes get stuck to the PEG and pliers will come to your rescue. Make sure you take them with you when you go away as that will certainly be the time it gets stuck.

Having had some leaks overnight, I’m grateful that I have an easy to wash rug beside my bed.

If you are prone to hospital trips then a go bag should include feed and ephemera, don’t assume the hospital will have your feed in stock or be able to get it easily. Also, take medication with you.

Bags and more

I have seen some tubies using rucksacks designed for hydration as they often have an internal loop to attach the feed bag to and a channel for the tubing to get from inside to outside. I’m wondering if the headphone port on many bags could also be used.

I have also come across, but not tried, the free arm which looks like it could be used to attach a feed set up to a wheelchair, table or other structure.

I have recently had to extend the amount of time I am hooked up to the pump and in lockdown that has been fine but once I re-enter the world, we are going to need a way of taking the pump and water out too.

As I already have a specific wheelchair bag that fits all my stuff in, I didn’t want to go down the rucksack route. I do also have a bag designed for the pump and feed but it is boring and black, and the way its designed means the tube kinks a lot and causes errors.

So, after a bit of thought and experimenting, I discovered that the pump attaches onto a tripod. Specifically, a Joby Gorillapod.

Nutricia florcare Infinity pump attached to a Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod and the water bottle hooked onto the wheelchair headrest

The longer term plan is to get a caribiner hook to attach the water/feed bag, the photo was just us trialling the idea.

Please share your own tips and tricks below!

Writing Workshop: Top Five Tips

I  went to a writing workshop on Saturday.  It was interesting and is a monthly thing so I’ll probably go back.  It was just a few group exercises and discussions but it meant that there was time in my life carved out for writing.

The main exercise we did was writing a sentence then passing it on for the next person to write the next sentence and so on.  At various points we were given prompts like add a twist, incorporate a building and then finish the story in one sentence.  It was really good for starting to get you writing and as a reminder that you can write sentence by sentence, you don’t sit down and write an entire epic novel at once.  Also, at one point poor handwriting meant that stories transformed into stones and completely turned the plot on it’s head!  After the exercise we came up with our top five tips for writing:

  1. Embrace mistakes and unforseen directions
  2. Maintain conflict
  3. Details matter, use them to create an atmosphere
  4. Go with the flow, be creative rather than logical – one day you’re the writer, one day you’re the editor, you can’t be both at once
  5. Take it one sentence at a time

I think it’d be interesting to try the sentence by sentence collaboration online if anyone’s interested?