Peg Ted children's book
Scope has produced Fun In The Sun, an illustrated early years storybook featuring Peg Ted and Mikki Dolly showing how tube-feeding does not stop children having fun.
PINNT is an organisation that supports people receiving artificial nutrition. They have a special section for children who receive artificial nutrition, Half PINNT.
For anyone who has a gastrostomy/MicKey button, we have found that the double-sided make-up pads prevent any infection to the site. We cut to the centre of the pad, put it round the MicKey button and put some micropore tape to hold it round the 'button'.
My daughter had an NG tube for a year. She now has a peg fitted and will be having the mickey button fitted soon. We found the NG tube extremely difficult because she was pulling it out all the time. Now we have had the peg fitted it has made our lives hundred times better.
Silk Nasogastric (NG) tubes
I am a paediatric nurse and we always use silk NG tubes rather than plastic as our policy is to change plastic ones weekly - they do start to disintegrate after this time. Silk ones are much easier to pass than plastic as they have a guide wire inside which makes them stiffer. You then remove it when the tube is down. I reckon most children say to me silk ones are more comfortable and I really don’t think they are easier to pull out. Many hospitals are reluctant to use silk ones because of the cost but I would strongly recommend them.
All in one surfsuits to keep all the lines and tummy bits undercover when in the pool or on a beach too!
Travel friendly bolus
My son is gastrostomy fed by bolus feeds every 4 hours. To ensure we are able to carry on with everyday life we feed him wherever we go. We try not to let it stop us but found that asking for hot water was a problem for some restaurants. We use a waterproof washbag and keep his bottle of feed, a flush, tubes and a baby bottle warming flask, heat up his milk wherever we are and do the feed. Voila!
You can make your own bolus / kangaroo holder from a music stand with the top section removed and bolt on in its place a "terry clip" of the correct diameter to hold the bolus set. The music stand can be bought for under £10 including postage from eBay.
Consider oral tasters for some people who are fed by tube to try to maintain some swallow function.
If your gastrostomy leaks (my son's pours!) then Sorbasan is the most absorbent thing I have found. Basically it's a seaweed dressing and there are lots of different versions and sizes.
Cleaning a gastro tube
If you are struggling to clean a gastro extension tube, especially if you use high calorie feeds or thickener, drag the closed clamp down the length of the tube. This helps to remove stubborn bits of feed that remain in the tube after flushing.
Lavender and tea tree
Try adding a couple of drops of lavender and tea tree oil to warm water and bathe the area around a gastrostomy. We've found this to be very effective in preventing any infections.
Keeping NG tubes in
Try cutting a little triangular notch within the tape that holds an NG tube in place. I find this can help keep the tube in when my daughter's in the mood to pull it out!
If you need boiled water for flushing g-tubes, get a cheap extra kettle. You can boil water last thing at night and let it cool in there, no more faffing with jugs and the "real" kettle is ready for a brew any time!
Drip-free MIC key
We have put a small self-adhesive plastic hook up over our sink to hang Emma's MIC-key extensions sets on to dry after washing. All the water drains out and they dry easily.
Tubie Friends is a non-profit org, which aims to take the fear out of feeding tubes. Excellent!
We found Manuka honey was helpful when our son's gastrostomy site was sore.
Our son is NG tube fed and his pump has a stand that can be very big to carry around so we detach the feeding pump and use a pipe cleaner to hold the bottle up - pipe cleaners are so great as they can wrap easily around a pram...
When preparing a pump feed rucksack, use the strap at the top to hang it from a kitchen cupboard handle, it keeps the bag upright and leaves hands free to thread the tubes through.