The first full week of February is feeding tube awareness week and until my own child needed a nasogastric tube (NG tube) I hadn’t really come across them very much. Many children who go through treatment for cancer will require tube feeding at some stage, mainly due to loss of appetite. One of the main side effects of treatment for the Dinosaur is that his appetite is severely suppressed by one of his chemotherapy drugs called mercaptopurine (6MP) and now he is in the maintenance phase of treatment, he takes this one every single day. His tube was placed 3 months into treatment for Acute Lymphoblastic Leukaemia because he had lost so much weight, he weighed less than he had when he was diagnosed so now I know he is getting enough nutrition.
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What is a nasogastric tube?
A nasogastric tube is a soft tube that passes up the child’s nose, along the nasal passage, down the throat and into the patient’s stomach. When they open their mouth wide and you are at the right angle, you can see the flexible plastic tube in the back of the child’s mouth. There is then a length of tube that remains outside of the nose that is held in place on the tip of the nose or against the child’s cheek with a piece of tape.
A nasogastric tube is used for enteral feeding (the intake of liquid food via the gastrointestinal tract) and also for administering additional fluids and medications. There are other types of feeding tubes but I won’t go into them here as I have no experience with them.
Correct placement of the tube
Some parents feel comfortable replacing their child’s ng tube themself but I’m not quite feeling up to that yet. Some parents have their child’s doctor or home health nurse place the child’s tube for them which is my preference. There are a few different types of ng tubes available that have one or two ports on the end, ones that last a short time and others that last a long time before they need replacing. What I have found best for us is to have a tube that can stay in place for around 3 months, this is mainly because he hates having it changed so one of my special requests for when he has his 12 weekly general anaesthetic, lumbar puncture and intrathecal chemotherapy is that they also replace his tube at the same time which is a short procedure but it dramatically helps to minimise the trauma he has to endure. This also has the added bonus of knowing that the tube placement is correct. Each time he has it replaced, I ask them to switch nostrils so that it prevents tissue trauma and stops him from getting sensitive skin.
Before the medical care team take him to the theatre, they check the length of the tube by holding the tip of the tube against his belly button, then holding it by the bottom of the breastbone, against the side of the face and making sure that the end of the tube is far enough away from the nose. Measuring the length before attempting to pass the tube will give just a little bit more reassurance that the tube will be in the right place. Once the tube has been placed you will need to use a syringe (I use a 20 ml syringe) to withdraw some of the stomach contents then using ph paper or a ph stip you can determine once and for all if the tube is in the correct position.
Changing the tape
How often you change the tape will vary depending on a whole host of factors. I find that I usually need to change the tape once a week however if the tape has got wet because of a bath, swimming, getting sweaty, lots of crying or a runny nose, then I will need to change it more often. Before you start to change the tape, it’s a good idea to get everything ready and laid out so that once you start you can get it done quickly and easily.
Finding the right combination of products to use and the correct taping method for your child is a bit of trial and error so I am sharing the way I tape the Dinosaur’s tube as general information for you and not as a set-in-stone set of instructions.
the products I use are:
- Adhesive remover – these are available as wipes, liquid sachets and prefilled applicator wands
- Cavilon barrier cream – I use the one that comes on a presoaked applicator
- Comfeel adhesive skin dressing – I cut them in half
- Tubie Cheeks hypafix tape – this is a brand of hypoallergenic quality, medical grade tape that is printed in various designs
Before I start, I put together a tray with precut patches of the adhesive tape, the adhesive remover, the barrier cream, a 20 ml syringe, another 20 ml syringe filled with cooled boiled water and some ph strips.
- First I use the adhesive remover to take off all the old tape, making sure that I hold the ng tube at the entrance to the nostril so that it doesn’t move. Once all the tape has been removed, I make sure there is no adhesive residue left on the tube or on the child’s skin.
- Apply the barrier cream to the cheek and allow it to dry.
- Apply a piece of comfeel to the cheek.
- Lay the tube across the comfeel and hook the end of the ng tube over the ear.
- Stick the chosen piece of Tubie Cheeks tape over the top of the tube being careful to make sure there are no creases. I round the ends of the tape and cut a slit in each end so they can cross over underneath the tube to give it more security.
- Check that the tube site is correct by withdrawing some of the gastric content with the syringe and testing the ph.
- Flush the tube with the cooled boiled water.
Where to get tube feeding supplies
As I’ve mentioned, I like to use Tubie Cheeks tape to secure his tube because they come in a range of fun designs, he likes to flick through his album and choose which tape he will wear next. These are not a necessity but my attitude is if you are going to have tape stuck to your face, make it cool tape! Tubie Cheeks tapes come in sheets that you can get 5 strips from and cost £1.99 per sheet.
I also use Cavilon barrier film, comfeel dressings and adhesive remover wipes. These were all prescribed by our GP so cost nothing, I get them via an online pharmacy so they are delivered directly to our door and as they are prescription items for a child they are free of charge.
The bulk of our tube-feeding supplies come from a company called Nutricia. They supply the liquid feed, the giving sets (the tubing that goes from the bottle, through the pump and attaches to the end of the NG tube), the 20 ml syringes for testing the ph level, the 60 ml syringes for flushing with water afterwards, ph testing strips, the pump that pushes the feed into him, spare NG tubes and empty sterile bottles to store the cooled boiled water in. Each month I log in to their website and order what I need, it then gets delivered to my door free of charge by courier about a week later. Nutricia also supplied us with a feeding bag that he can wear as a backpack when he’s out and about and a stand to put in the bag with the pump and bottle in when he’s on a feed.
