This week we’re talking about all things ng. We were fortunate enough to only be reliant on an ng tube for a matter of weeks, but in that short time I became very aware of the challenges that many of you are facing long-term.
Before tackling some practical challenges however, I’d like to briefly celebrate the simple ng tube - it is a literally a lifeline for many. Really uncomfortable to insert and awkward to live with but a lifeline nonetheless. For us it made the difference between aspirating and not aspirating, lungs at risk and lungs that could recover. Although it isn’t easy or pleasant, it has massive benefits, which are worth remembering when you can’t get a pH or it comes out yet again!
Please remember as you read this that I’m writing as a mum and sharing from our own experiences, not from a healthcare background. Always check any suggestions on here with your medical team first to make sure that it is suitable for you/your child.
Taping seems to be most people's biggest frustration, it's certainly the most frequent ng topic in online support groups. Everyone seems to tape slightly differently but these are the things that I learnt were important....
Know your tape - There are many types and their names get fired around as if you know them all. I would just nod in agreement and actually had no idea what tape the nurse was referring to until I goggled it later! Here is my summary...
DuoDERM - this is a slightly rubbery/spongy dressing and is popular for applying to the skin under the ng tube. Other tapes stick well to it and it protects the skin for most people.
Tegaderm - a clear cling-film like dressing which is usually used for holding cannulas in place or when applying magic cream for blood tests. It’s a popular choice for over the top of the ng tube, to stick it down onto the duoderm/face. Personally I found that it rolled away from the nose area as soon as it got moist or rubbed by little hands.
Hypafix and Mefix - These are white and look pretty identical but Hypafix contains a water-insoluble adhesive whereas the adhesive in Mefix is water-soluble. This means that the Hypafix should theoretically stay in place better and for longer. They are used to secure the tube to the face/DuoDerm.
There are kinesiology tapes that some people love to use such as RockTape and Rea Tape. They are used for strapping sports injuries and they are incredibly sticky, plus they come in nice patterns! You can buy them on Amazon. As this is a non-clinical option I would check with your community nurse first.
When most else fails some people manage to get hold of Tender Grips,which are usually used for oxygen tubing but work very well at holding ng tubes.
If tape isn’t working at all then another option is a bridle. If the tube is coming out repeatedly then this may be something that your medical team consider. They are used more often with nj tubes as it’s more imperative that they stay in place.
Know some taping tricks of the trade - The first time the tape is applied you will probably be dismayed at just how quickly it comes loose! Everyone is different and it takes a lot of trial and error to find the taping method that works best for you. Here are things that you could try….
Tape combinations - Don’t just stick with what you did first if it's not working. Try something else such as how about DuoDerm under and over? Or DuoDerm under and Hyperfix followed by Tegaderm on top? Some people find Hypafix works best under the tube and others prefer no tape on the face and stick the tube directly to the skin.
Tape position - Try next to the nose, under the nose, over the bridge of the nose. We always went for over the nose and often added more tape when he was asleep, extending further over the nose than the last piece in an attempt to make the tube last a little longer. It looked pretty messy after a few days but he wouldn’t let us touch it so changing the tape wasn’t easy!
Cutting the tape - try cutting a slit in the top layer of tape and wrapping it tightly round the tube at the end closest to the ear for extra security.
Blister plasters - this is a genius idea that I read about, suggested by a community nurse for a child who was allergic to most tapes. They used it instead of DuoDerm to protect the skin and it worked exceptionally well, sticking securely and allowing the skin to heal underneath. It might be something to consider if skin reactions are causing an issue but speak to your community nurse first for their advice.
Using strips of tape - Another great suggestion by a mum on a forum was cutting the tape used under and over the tube into strips placed vertically, rather than using one whole piece. It involves the child staying still for longer while it’s applied but it means that if it comes loose near the nose then you only need to replace that section rather than the whole lot - genius!!!!
Cavillon film - This is a barrier cream which is used under the tape to help it stick better to the skin. You need the ones on lollipop applicators, not the spray, and it's available on prescription.
Friars Balsam - This is an old fashioned decongestant that I was recommended by an anaesthetist who needed to stick very important tubes to very poorly people in ICU. It goes incredibly tacky and sticky as it dries and can be applied to the skin before placing the tape. I bought some at the chemist. I found it hard to apply as my son wouldn’t stay still but I can see how it would work - it was hard to remove the stickiness from your fingers! If you're going To try it then maybe do a patch test on the skin somewhere first rather than putting it under tape for the first time.
Removing tape - Although the focus is always on keeping the tape in place it needs removed sometimes too! Appeel medical adhesive remover wipes can make this a lot easier and most people seem to get them on prescription so they are worth asking for.
PROTECTING THE TUBE
We were told to protect and support the weight of the tube between feeds by taping it to our son's T-shirt. This worked, but it was tricky to then get off at times and his T-shirts were covered in sticky residue within a few days so we came up with an alternative....Barbara's pockets! These were simple material 'pockets' made be our great friend, Barbara, and we simply safety-pinned them to the neckline inside his T-shirt. I could then coil up the tube between feeds and place it in the pocket which meant that it didn't catch on anything or pull on his nose. Little Miss Muffet Babywear make some beautiful ones to order which clip onto clothing.
Bathtime was always a challenge as the tube would be hanging and swinging around and needed 'looked after' the whole time. A mum recently commented that she used a waterproof pouch such as this one to hold the tube - I wish I'd thought of that when we needed it. Bathtimes would have been a lot easier!
TAKING AN ASPIRATE FOR A PH READING
This was another thing that was talked about as if it was simple but I actually found it quite hard, especially first thing in the morning. If you can’t get an aspirate then we were recommended the following, which are supported by the GOSH clinical guidelines:
- Moving into different positions such as side-lying to hopefully shift the little amount of stomach acid to where the tube is lying in the stomach.
- Inject 1-2ml of AIR into the tube to unblock any blockages at the end of the tube (never flush the tube before you’ve pH tested)
- If food is allowed then eat a small amount to get the stomach to produce more acid.
- If non-oral, provide mouth care as this will help to stimulate the production of stomach acid. But whatever you do, DO NOT brush teeth as part of this as the aspirates then stay alkaline for a really long time due to the swallowed toothpaste (that was a frustrating morning)!
MAKING IT A LITTLE MORE FUN
Having an ng tube is not much fun! Especially for children it can be helpful to normalise it and to involve them as much as possible. One way you can do this is through buying tape stickers. Tubie Doodles have all sorts of designs printed onto Hypafix and you can use them to stick the tube down or just as decoration over the top. It’s run by a mum with a daughter who has an ng so you’re supporting a small business and buying from someone who understands your challenges. You can check them out here
That’s it for this post. Please remember to check any suggestions that you read here with your clinical team before you try them. There’s other aspects of having an ng that I’m looking forward to writing about but I’ll leave them for another day. If you have any further suggestions for readers then please add them to the comments below or join the conversation on our social media channels.