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Preparing rucksack
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 two hands free to thread the tubes through.
Use pipe cleaners
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 handle or a chair or any fixed point. They are handy to have in your bag and it means carrying less equipment around which is always positive.
Tubie Friends
This is a non-profit org, which aims to take the fear out of feeding tubes. Excellent! www.tubiefriends.com
Drip dry 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.
Extra kettle
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 anytime!
Gastro covers and belts
www.bellybuttonsandbelts.com is a US based website selling funky gastrostomy covers and belts. Aiming to make buttons 'fun', these comfortable products can also stop wandering hands from pulling out the tubes. Clamp covers also available.
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!
Lavender and tea tree helps
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.
Coke hits the spot!
Coca-a-cola is great for unblocking a peg or mickey button. We drag the clamp daily, but for a big block, coke is great.
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.
Soothing cream for leaks
If a leaking gastrostomy is burning the skin, then a burn cream like flamazine will really help and be soothing. It worked far better for us than any barrier cream and an anti-acid helped reduce the acidity of the leakage (be warned the GP may refuse the anti-acid due to price but it is worth the fight).
Sorbasan
If your gastrostomy leaks (my son's pours!) then sorbasan is the most absorbant thing I have found. Basically it's a seaweed dressing and there are lots of different versions and sizes.
Oral tasters
Consider oral tasters for some people who are fed by tube to try to maintain some swallow function.
Bolus aid
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 inc. postage from ebay. It is collapsible and therefore portable
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 from Mothercare, heat up his milk wherever we are and do the feed. Voila!
Tangle free
You can make a sling to keep a central/Hickman line to sit around the neck. It prevents it from getting tangled up or pulled. We used bright coloured fabric (character to suit) just a simple square pouch again with a little velcro to shut and tape or soft cord for necklace.
Cover ups
All in one surfsuits to keep all the lines and tummy bits undercover when in the pool or on a beach too!
Moisture for dry mouth
John breathes through his mouth and it gets very dry so I use lemon and glycerine mouth swabs that I get from www.henleysmed.com
Silk ng tubes get thumbs up
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.
Peg works
My daughter had a 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.
Infection-free gastrostomy
For anyone who has a gastrostomy/MicKey button, we have found that the double-sided make up pads from Boots/Tesco etc 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'. This lifts the button away from the skin and prevents sweating. Since we started this we have had no strep/staff infections. Change the pad once a day. Cheap and effective!
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