Percutaneous Endoscopic Gastrostomy (PEG): tube feeding at home

A PEG tube is a small feeding tube that goes straight into the stomach through the skin. It is a type of gastrostomy, held in place by a plastic disc which sits just inside the child’s stomach. In children, PEG tubes are placed by the surgical team.

It helps children who cannot eat or drink enough by mouth. It is a safe and long-term way to give feeds, fluids and medicines directly into the stomach.

Corflo PEG picture

After the PEG is placed

Pain

After the PEG tube has been put it, your child’s stomach and the skin around the tube may be sore. Regular pain relief should help. If your child is still in pain, please contact the surgical team at the hospital where the tube was placed. Their contact number is at the end of this page.

Dressings

When your child comes back from surgery, they may have a dressing covering the tube. If they do, please follow the surgeon’s advice about when to remove it. The dressing is usually kept in place for 2 weeks, until the stitches are removed.

Cleaning

Once the dressing has been removed, clean the skin around the gastrostomy opening, called the stoma, every day. Use sterile gauze and sterile water or cooled boiled water. Gauze will be given to you before your child goes home and can be prescribed by your GP.

After 4 weeks, you can use mild soapy water to clean the stoma site each day. Dry the area well afterwards. Showers and shallow baths are allowed after two weeks, which will have allowed the stoma tract to heal. Avoid bubble baths or soaps on the stoma site.

Gastropexy sutures

Your child may have small button-like stitches on their stomach after surgery. These are called gastropexy sutures. They are removed 2 weeks after the PEG is put in by the paediatric enteral nutrition nurse specialists (PENNS) from the home enteral feeding team (HEFT).

They may come loose or fall off in that time. If 2 or more stitches fall off, or they become painful, or feel too tight, please get urgent medical advice from the surgical team at the hospital where the PEG was originally placed.

How to care for your child’s gastrostomy

Daily checks

Clean the stoma every day with clean water and gauze. Check it every day for signs of infection, swelling, redness, soreness, or discharge.

Advance and Rotate

Advance and rotate should only start once the PEG has been in place for 4 weeks. The PENNS team will do this for the first time. They will then hand this over to the children’s community nursing (CCN) team. You can be trained to do this if you feel comfortable.

To advance and rotate the tube, gently push the PEG tube 3 to 4cm into the stomach area, turn it all the way around once, then gently pull it back until you feel light resistance. This is usually done once a week, unless you are told to do it more often. It helps prevent buried bumper syndrome, which is when the internal part of the tube becomes stuck in the stomach wall. The CCN team or PENNS team can support you with this.

Tube changes

PEG tubes are changed in hospital by the surgical team. They can last several years.

If you are having problems with the tube, contact the PENNS team. They will advise you and contact the surgical team if needed.

Swimming

Children with a gastrostomy tube are still able to go swimming and attend hydrotherapy sessions once their tube has been in place for at least 12 weeks and is fully healed.

If the gastrostomy is infected, we would not recommend swimming until it is treated and healed. Some people prefer to cover their gastrostomy with a waterproof dressing, but this is not essential.

If there is no infection, but your child is having ongoing issues with their stoma site, it is advised to cover their gastrostomy with a waterproof dressing. Please discuss this with the PENNS or CCN team, as they can advise what type of dressing should be used and request these from your GP.

Oral hygiene

If your child is unable to take any oral fluids, they should have regular mouth care. Keeping the mouth clean helps prevent infection. All children should be registered with a dentist and have regular dental check-ups.

If your child has little or no food by mouth, it is important to keep their teeth and mouth clean. This can help prevent illness and keep them comfortable.

If your child is supported by a Speech and Language Therapist, please follow any advice they give about oral care or safe swallowing.

Venting

Venting is the process of removing air from the stomach through the tube. This can help if your child has tummy discomfort. Venting can be done several times a day if needed. The PENNS or CCN team can show you how to do this safely. The steps are simple, as described below:

• If the PEG has a clamp, close the clamp first.
• Remove the purple plunger from a 60ml syringe and attach the syringe to the PEG.
• Hold the syringe above the height of the stomach
• If you closed the clamp, open it now.
• Let the air escape. This may take a few minutes.
• When feed or stomach contents start to come up the tube, close the clamp again. Flush the tube with water and disconnect the syringe.

Complications

Over granulation

Some children with gastrostomy tubes may get over granulation tissue. This is when a small lump of tissue that can grow around the stoma. It is often harmless, but it can be uncomfortable and may bleed.

This can be treated with a steroid cream and dressings.

If you notice any over granulation, please contact PENNS or CCN team for support. We advise using the recommended treatment for 2 weeks before considering a different treatment.

Infection

Check the stoma site regularly for signs of infection. This can include redness, swelling, discharge, pain, or the area feeling hot. If you notice any of these signs, please contact the PENNS team, CCN team, or your GP.

They may need to check the stoma site and may take a swab. We will wait for the swab results before starting antibiotics unless your child is unwell, in which case they should be seen by a doctor.

A swab is a small sample taken to check for infection.

If your child has a high temperature, is very tired, has a rash, or you are worried they may have an infection, please arrange for them to be seen. You can contact your GP or the Paediatric Assessment Unit (PAU) at Gloucestershire Royal Hospital as soon as possible.

Leakage

Leakage can happen for different reasons. It is important to check what is leaking and where it is coming from.

Leakage can come from:

• The stoma
• The stomach
• A damaged tube or a tube that has moved out of place

If you notice leakage, pain, or swelling when flushing the tube, stop using the tube. Do not use the tube until it has been checked.

These may be signs that the tube is not in the tight place. Please contact PENNS, CCN team, or PAU urgently.

Blockages

If you think the tube is blocked:

• Use a 60ml syringe to flush the tube with warm water. Use a gentle pulsing motion for at least 30 minutes.
• If that is not successful, with a 60ml syringe, flush the tube with unflavoured sparkling water using a pulsing motion for at least 30 minutes.

Giving a feed

Wash your hands and prepare the feed if needed. Your child should not lie flat during the feed. They should be at a 30 degree angle or higher during the feed and for at least 30 minutes afterwards. This helps reduce the risk of vomiting or aspiration, which is when feed or fluid goes into the lungs. Follow the feeding plan given to you by your child’s dietitian.

Flush the tube with a small amount of water before connecting the feed. This helps check that the tube is not blocked and is not causing pain or leakage when used.

Watch your child during the feed. If they vomit, stop the feed for a few minutes. Wait until your child settles, then start the feed again. If vomiting continues, or if you are worried, please contact PENNS, CCN, your child’s GP, or PAU for advice.

After the feed has finished, flush the tube with the amount of water shown on your feeding plan.

Pump feed

Pump feeding may be needed to give the feed slowly and help your child tolerate it. Please discuss this with your dietitian to check if it is suitable for your child.

For instructions on how to use a pump, enter the link below into your browser and select “Flocare Infinity III volume-rate therapy instructions for use”.

Flocare Infinity pumps

https://www.nutricia.co.uk/hcp/resource-centre/flocareinfinity-pumps-instructions-for-use.html

Gravity bolus feed

If your feed plan says to gravity feed rather than pump feed, please follow these instructions:

• Connect the feeding tube to the syringe without the plunger and gently pour the required amount into the syringe. Do not overflow the syringe.
• If the feed does not start straight away, use the plunger to give a very gentle push. Remove the plunger once the feed starts.
• If the feed is going down too quickly, hold the syringe lower and closer to the same level as the tube. If the feed is going too slowly, raise the syringe to help speed it up.

Syringe bolus feed

We do not usually recommend this method for children. If you would like to consider it, please discuss it with your dietitian.

Medications

Medicines should be in liquid form where possible. Give each medicine separately. Flush the tube with at least 5 to 10ml of water before and after each medicine, unless you have advised otherwise.

What to do if the tube comes out

If the tube has been in for less than 6 weeks:

Cover the stoma with gauze and take your child to the Emergency Department (ED) at the hospital where the tube was placed.

If the tube has been in for 6 to 12 weeks:

Use a stopper device if you have been trained to do this. Cover the area with a dressing or gauze and go to ED. A stopper device helps stop the stoma, or hole, from closing.

If the tube has been in for more than 12 weeks:

Insert a stoma stopper device if you have been trained to do this. Contact the PENNS or CCN team as soon as possible.

It is important to keep the stoma open so the surgical team can put in a new tube. If the tube comes out less than 12 weeks after the gastrostomy was placed, there is a risk that a new tube could go into the wrong place and cause tissue damage. This is why your child needs to be seen by the hospital team, so the tube can be put back safely

Stopper device picture

Support at home

Before your child goes home, the hospital dietitians will review them. They will make sure your child is managing enough feed. After discharge, you will continue to have contact with your child’s dietitian within HEFT.

The PENNS team may visit to check that you feel confident with the ongoing care of the gastrostomy. They will arrange to visit you and your child to remove any sutures and complete the first advance and rotate of the tube. Your deliveries from the feed company will change slightly to include what you need for gastrostomy feeding.

Contact information

Home Enteral Feeding Team

Email: ghn-tr.homeenteralfeedingteam@nhs.net

Tel: 0300 422 5645

Monday to Friday, 8.30am to 4.30pm.

Please note we are not available on bank holidays.

When you call this number, please leave a voicemail message. Messages are checked regularly and help us respond to calls in order of urgency.

Children’s Community Nursing Team

Email: ChildrensCommunity@ghc.nhs.uk

Tel: 0300 421 8299

Monday to Sunday, 8.00am to 6.00pm

For weekends and bank holidays use 07917 203432 Please note that the community teams may not have capacity to complete home visits at short notice and may ask you to be seen in the PAU at Gloucester Royal Hospital.

Your child will have open access to the PAU at Gloucester Royal Hospital.

Bristol Royal Hospital for Children

Switchboard Tel: 0117 923 0000