Guest Blog – Tammy, a Tubie parent and founder of Tubie Love
Tammy is the founder of Tubie Love and a parent with firsthand experience navigating tube feeding in everyday life. In this guest blog, she shares practical tips and routines that have helped her family stay organised, prepared, and confident when managing G-tube care outside the home.
As parents/caregivers to a child with a G-tube, we can’t plan everything, but having an emergency kit on hand is an absolute must, and a little peace of mind!
We always had 2 kits – one for the nappy bag and one for the car. When Aidan started school, we sent along a mini emergency kit with instructions on what to do should his button come out. Now that Aidan is much older, we just have one kit for the car (and his school kit).
You might think 2 kits is a bit much so do what works for your family, but I think its better to be over prepared!
Mini G-tube kit
Any container that is going to fit your nappy bag is perfect; we used a small square lunch box. Big enough to contain everything you need but small enough to not take up too much space.
1. Hand sanitiser for obvious reasons and some alcohol wipes are also handy to have in case you need to wipe anything down that may have been dropped.
2. Lubricant, get your community nurse to supply the little single use packets as its last thing you want to be without if you must replace the button!
3. Gauze, chuck in more packets than you think you may need!
4. Saline solution, again check with your community nurse if you can be supplied with the smaller 10ml bottles, also great for dealing with any cuts and scrapes (see, that extra gauze comes in handy) while you’re out.
5. Spare Extension set, great to have on hand in case you leave the house without one (guilty).
6. Plaster/band aid, a great little tip we learnt from Aidan’s nurse – if the button is falling out and for whatever reason you can’t replace it then and there, tape the button down into the stoma so it doesn’t close up. The stoma can close up rather quickly if nothing is inserted, so it’s really important to keep the stoma open to avoid a surgical appointment.
7. Tape, any medical grade tape for securing gauze over the stoma.
8. If you have to administer medications while out, you may want to keep them separate so find another little container that can hold pre-drawn syringes and water flushes. An insulated lunch box with an ice pack is great if they need to be kept cool as well.
Car G-tube kit
This kit is ideal to have in the car in case you ever get stranded or find yourself away from home without supplies. A larger lunch box or small box that you can easily grab from the boot of your car. Basically, the same supplies as your mini kit with a few extras like:
1. Formula/enteral feed ready to hang bottles or prepackaged purees – anything that doesn’t need refrigerating but, in a pinch, you could administer by syringe if needed be. Remember to check dates and rotate out.
2. 60ml syringes for feeding and water flushes
3. Bolus feed extension set, even if you don’t currently bolus feed, it’s handy to keep one or two of the bolus extension sets that come in the Mic-key button boxes in a sealed bag. Again, if you’re in a pinch as the pump isn’t working, or you’ve forgotten the pump charger, you can feed using these extension sets and a 60ml syringe.
4. We would always include a spare Mic-key button (in the sealed box) if we were going away overnight or far from home, you just never know when you’ll need it.
Aidan’s school kit is basically the mini kit with instructions to cover the stoma with gauze (if the button has come out completely) and tape it down till we can get there with a replacement button.
It can feel a little overwhelming leaving the house and thinking of everything you need to bring so having this little kit all stocked and ready is one less thing to worry about!
Preparing a simple emergency kit is one small step that can make daily care feel more organised and less stressful. Learn more about everyday care solutions that support comfort, safety and independence at independentlyyou.com.au.