Going home with your child with an NG tube

Beatrix Birth and Child Centre, in collaboration with Kinderthuiszorg, allows parents to take their child home and tube-feed at home. This leaflet is full of information about tube feeding your child.

You have talked about giving your child tube feeds at home with your paediatrician. As a result, you can go home with your child. After all, your child is

• medically stable
• growing well

Only when you are entirely ready to take over caring for your child can you go home with your child.

Tube-feeding your child at home
At home, your child can learn to eat and/or drink at their own pace. Until they can eat or drink themselves, you can give them tube feeds at home. It is important that at least two people in your household can give tube feeds. The paediatric nurse will teach you how to tube-feed your child at home. You also need to take an e-learning, a kind of online course.

If your child pulls out their tube, you do not have to insert a new one yourself. Kinderthuiszorg will do this for you. Kinderthuiszorg will provide support at home. You can reach them by phone 24 hours a day on 088-0200700.

Why does your child need tube feeds?

There are several reasons why your child may need to be tube-fed:

• Reduced appetite;
• Stomach and/or intestinal problems;
• Heart defects;
• Difficulty eating and/or swallowing;
• Delayed physical and/or mental development;
• A combination of the above.

If your child has one of these problems, they may not be able to get all the nutrients they need. In that case, they need tube feeds. This is done through a thin, flexible tube called a nasogastric tube, or NG tube. An NG tube enters through the nose and passes through the oesophagus into the stomach. There is a lid on the visible end of the tube that can be used to close the tube or attach a syringe or extension tube. Your child has an NG tube to make sure they can feed completely.

Types of tube feeds

Your doctor and/or dietician will explain how to tube feed your child. They will go over the following:

• the type of feed;
• the amount of feed;
• the tube feed schedule;
• how to give tube feeds.

All the above depends on your child’s age, weight and illness

Tube feeds and eating by mouth

The doctor, nurse and/or lactation consultant will give you information on combining food and drink and tube feeding. You will receive this information before your child goes home with you.

The speech therapist can also explain and advise on how to encourage your child to eat and drink.

How to give tube feeds
There are two ways to give tube feeds with a nasogastric tube (NG tube):

1. By hand: You can give tube feeds by hand, using a syringe.
2. With a pump.
   
   

E-learning for parents

Before you are allowed to give tube feeds to your child yourself, you must complete an e-learning with theory and questions. The e-learning ‘NG tube care and administering liquid feed and medication' for parents can be found on this website: https://integralekindzorgmetmks.nl/ouder-kind-educatie/ouders/. You only need to complete the section on ‘Tube feeding’.

You will receive a certificate if you pass the e-learning as proof. It is important that both parents or guardians do this e-learning and get the certificate.

Bring your certificate to your child’s unit and show the certificate to the nurse caring for your child. They will scan the certificate and add it to your child’s medical record.

What do you need?

• The correct amount of feed. The feed should be at room temperature;
• A large 60 ml syringe for tube feeding;
• A 10 ml syringe with 3-5 ml of lukewarm tap water.
• Strap/tape for the tube feeding syringe.

How to give tube feeds with a pump

What do you need?

• The correct amount of feed. The feed should be at room temperature;
• Pump;
• Tube feeding system + vial/bag of tube feed;
• 10 ml syringe with 3-5 ml lukewarm tap water.

Instructions

1. Preparation

• Before you start giving a tube feed, make sure that everything you need is within reach and in a clean place.
• Wash your hands with water and soap and dry them thoroughly or use hand sanitiser.

2. Always check the tube before feeding

• Is the tube deep enough?
• Is the tube firmly in place?
• Is the tube free of any coils and twists? (Look inside your child’s mouth and throat).

If the answer to one of these questions is no, or if your child pulled on the tube or threw up, check whether the tube is still in the right position. To do so, you have to measure the pH
and check the colour of the gastric fluid. Read more about pH and gastric fluid here.

Information on your child's pH and gastric fluid

When to check the pH level

• if your child is stuffy;
• if your child turns blue;
• if your child starts coughing;
• if your child is in pain;
• if you notice that your child is very ill;
• if your child is sweating a lot.

Always check the colour of the gastric fluid. If the fluid is not the right colour, contact Kinderthuiszorg. Continue reading for more information about pH and gastric fluid.

What is pH?

pH is a measure of the acidity of a solution. Gastric fluid is acidic. Measuring how acidic it is tells you whether the tube is in the right place in the stomach or not. If the pH is below 5.5, the tube is in the right place. Antacids will not affect your child’s pH.

How to check pH

• Using an empty 10 ml syringe, draw back 3 to 5 ml of air;
• Attach the syringe to the tube;
• Inject air into the tube;
• Draw back a small amount of fluid;
• Remove the syringe from the tube and put the lid on the tube;
• Drip the fluid onto the pH strip and wait a few seconds;
• If the pH is below 5.5, the tube is most likely in the stomach.
• If the pH is above 5.5, the tube is probably not in the stomach. When this happens, do not give a tube feed and call Kinderthuiszorg on 088-0200700.

Check the colour of the gastric fluid

The tube is in the right place in your child’s stomach if:

• The fluid is clear or cloudy;
• There are half-digested ‘strings’ of feed in the fluid;
• The fluid is colourless;
• The fluid is white or milky white;
• The fluid is off-white;
• Or the fluid is light brown.

What to do if you cannot draw back gastric fluid

• Change your child’s position. Consider putting them on their side or propping them up;
• Wait 15 to 30 minutes;
• Try drawing back gastric fluid again.
• If you still cannot draw back any gastric fluid, call Kinderthuiszorg on 088-0200700.

3. Giving a tube feed with a syringe

• Wash your hands with water and soap and dry them thoroughly, or use hand sanitiser.
• Prepare the feed (along with any supplements).
• Take a large, empty 60 ml syringe and remove the plunger.
• Open the lid on tube.
• Attach the syringe to the tube.
• Always hold the syringe above the tube. Fill the syringe with feed.
• Holding the syringe, slowly pour the feed into the syringe. The feed will go down on its own. If the feed does not go down on its own, briefly insert the plunger and push down a little before removing the plunger again.
• Hang the syringe from the strap, making sure it does not wobble and stays directly above your child.

4. After feeding

• Remove the large, empty syringe from the tube.
• Fill a small syringe with 3 to 5 ml of lukewarm tap water and attach it to the tube.
• Slowly rinse the tube with 3 to 5 ml of lukewarm tap water, making sure to flush out any remaining feed.
• Remove the empty syringe from the tube.
• Close the lid on the tube.
• Tidy everything up.
• Clean the syringes with warm water.
• Place the plunger and barrel side by side on a clean cloth and leave to dry.
• Wash your hands with soap and water and dry your hands thoroughly or use hand sanitiser.

5. Giving tube feeds with a pump

• Wash your hands with water and soap and dry them thoroughly or use hand sanitiser.
• Make sure that everything you need is within reach and in a clean place.
• Check whether the pump has been charged or plugged in.
• Check that the bottle or bag of tube feed is undamaged, has not expired and is at room temperature.
• Gently shake the bottle or bag.
• Open the packaging of the delivery system.
• Connect the delivery system to the tube feed bottle or bag.
• If the feed is in a bottle, screw the twist cap of the delivery system onto the bottle.
• If the feed is in a bag, insert the thick plastic needle through the seal and secure.
• Follow the pump’s instructions to get it ready for use.
• Insert the delivery system into the pump, following the pump’s instructions.
• Fill the delivery system with feed, following the pump’s instructions.
• Set the tube feeding rate, following the pump’s instructions.
• Check that your child’s tube is in place. Is the tube deep enough? Is the tube firmly in place? Is the tube free of any coils and twists? (Look inside your child’s mouth and throat).
• If the answer to one of these questions is no or if your child vomited, check the position of the tube by measuring the pH and checking the colour of the gastric fluid.
• Make a kink in the tube to prevent spills when you remove the lid.
• Open the lid on the tube.
• Connect the delivery system to the tube.
• Unkink the tube.
• Start the pump.
• Check that the feed is passing through the tube properly and whether the tube is not leaking. Also make sure to check the pump rate.

6. What to do after a tube feed with a pump

• Stop the pump when all the feed has passed through the tube.
• Make a kink the tube.
• Disconnect the delivery system from the tube.
• If you want to use the system again within 24 hours,
  flush it with water and twist on the lid.
• If you will not be using the system again within 24 hours,
  disconnect the system from the pump and discard.
• Take a syringe with 3-5 ml of water and attach it to the tube.
• Unkink the tube.
• Flush the tube with 3 to 5 ml of water.
• Make a kink in the tube.
• Remove the empty syringe from the tube.
• Close the lid on the tube.

It is important to tape the tube in place so that it cannot shift. If you find that the tape is dirty or starting to detach, apply new tape. Secure the tube by taping it to your child’s cheek.

Method:

1. Cut the adhesive tape to size;
2. Wash your hands;
3. Carefully remove the old tape (using water or tape remover) from cheek to nose, holding the tube in place with your finger. If the skin protection patch is still firmly attached, you can leave it.
4. If necessary, apply a skin protection patch first.
5. Stick the tube back onto the skin protection patch;
6. Always check that the tube is still in place after bathing and/or showering.

• Feed can only be reheated once, so always throw away any leftover food.
• You can use the syringes multiple times, making sure to wash them thoroughly with warm water and replacing them after 72 hours.
• This leaflet contains information about storing breast milk: 'Pumping breast milk'.
• Feeding tubes can remain in place for up to 6 weeks. After 6 weeks, the risk of blockage increases significantly. On top of that, leaving a tube in place for more than 6 weeks is unhygienic.
• You can store closed bags of tube feed at room temperature.
• After opening, you can keep a sealed bag of tube feed in the fridge for up to 24 hours.
• You can administer tube feed in ready-to-use bags over the course of 24 hours,
• home-made food over the course of 6 hours,
• and breast milk over the course of 4 hours.
• Keeping tube feed in the fridge? Wait 15-30 minutes for tube feed to come up to room temperature before administering.
• You can also use the microwave.
• You should only warm breast milk in a jug of warm water or in a bottle warmer.
• Always check the expiry date before feeding your child. Use up feed with the earliest expiry date first.

Oral care and your child

Oral hygiene is very important for children who need tube feeds in order to prevent inflammation and infection. Children who do not eat or drink by themselves will start producing less saliva. This can result in cavities, as well as inflamed gums, oral mucosa and salivary glands. Your child may also get an fungal infection of the mouth, such as thrust. It is very common in children and looks like a white coating on your child’s tongue, palate and the inside of their cheek. If you suspect that your child may have thrush, you can easily check with a cotton bud. If the white layer can easily be rubbed off with the bud, your child does not have thrush. Always call your General Practitioner if you suspect that your child may have thrush or if you have doubts.

Always clean your child’s mouth at least twice a day. Here is how:

• Gently clean your child's mouth with a gauze pad and water.
• If your child is teething or already has a tooth, you can start brushing their teeth. Always follow your speech therapist's advice if they advise you otherwise.

Nasal care and your child

Because your child has an NG tube in one of their nostrils, they need extra nasal care. Here is how to clean your child’s nostrils.

• Clean your child’s nose with water
• and dry it thoroughly.
• Gently lubricate the nostrils with a little Vaseline if needed. Avoid Vaseline if your child is also on home oxygen therapy.
• Regularly clean your child’s nostrils with a cotton bud and water. You can also rinse their nostrils with a saline solution if needed.
• You can prevent irritation by avoiding the side of the nose when taping the tube in place.

This chapter goes over several problems that you may experience at home, as well as how to solve them. If you can’t find your problem or aren’t sure, call the Kinderthuiszorg nurse for advice. If you have a question for a paediatrician, dietician or speech therapist, you can call them during office hours.  

Your child is choking

Your child may choke if feed enters their airways. If your child has any of the following symptoms, call your General Practitioner or 112 in the event of an emergency.

Symptoms to watch out for:

• Coughing
• Breathing problems, such as shortness of breath, rapid and/or audible breathing

Feed will not pass through the tube

Your child has diarrhoea/has to vomit
Does your child have abdominal cramps, nausea, or bloating? If your child has a bloated abdomen, you can try removing some air with a 10 ml syringe.

Important: giving tube feeds can affect the quantity and texture of your child’s poo.  It may, for example, become more watery and/or slimier.

Your child is constipated (difficulty pooing)
If your child has not had a poo for more than three days, they are constipated (bowel obstruction). Children who need tube feeds may poo less. Note: If you are tube-feeding your child with breast milk, it is entirely normal for them not to poo for three days.

Your child has nasal irritation and/or an irritated nostril.

Great news, you can bring your child home! While it’s something to look forward to, it can also be a nervy time. We’ll notify Kinderthuiszorg that you are going home. They will visit you on the children’s ward to explain what Kinderthuiszorg can do for you. Kinderthuiszorg and your dietician and speech therapist (as needed) will help you and support you so that you can comfortable transition from hospital to your home.

Kinderthuiszorg will also pay home visits, starting from the first week after you are discharged from hospital. Kinderthuiszorg can help you give tube feeds to your child. They can also answer any questions you may have about giving tube feeds. If your question can best be answered by a dietician or speech therapist, Kinderthuiszorg will refer you to a capable professional. You can also get support from your speech therapist, either over the phone or in the hospital.

You can call Kinderthuiszorg 24/7. You can always ask Kinderthuiszorg to insert a new tube or help you give your child a tube feed at home.

Have any questions and/or comments after reading this leaflet? Feel free to ask the ward nurse!

• For general questions about your child within 72 hours of your discharge from hospital, call the Beatrix Birth and Child Centre on 0183 64 44 65.
• Have a question about giving tube feeds? Call Kinderthuiszorg on 088 02 00 700.
• To order additional tube feeding supplies or ask a question, call our supplier Eurocept on 030 66 92 112 or send an email to medischevoeding@eurocept.nl.
• For general questions about your child's development or childcare, contact the youth nurse at the child health centre.