Percutaneous endoscopic gastrostomy (PEG) tubes – in children

What is a gastrostomy?

A gastrostomy is a surgically made stoma (hole) from the skin to the stomach. A gastrostomy is formed when you or your child cannot eat or cannot eat enough to meet nutritional requirements. A gastrostomy tube is used to deliver nourishment, liquid and medication (or a combination of these) into the stomach.

What is a ‘PEG tube’ and how is it inserted?

A PEG tube is a feeding tube which is inserted into the stomach to provide a safe and long term method of obtaining nutrition, hydration and/or medication. A PEG tube is inserted in children under a general anaesthetic. A gastroscope (a flexible instrument with inbuilt camera) is passed through your child’s mouth, down their oesophagus (food pipe) and into the stomach.

The stomach is then filled with air and a needle is passed through the skin into the stomach. The tube itself is inserted by it being threaded down the oesophagus, into the stomach and out through the hole made by the needle. The internal retention disk (flange) remains inside the stomach and then an external fixation plate is applied next to the skin to hold the tubing in place. Connectors and clamps are then added to the external tubing before the child is woken from the anaesthetic.

Internal retention disk (flange): This holds the PEG tube in place next to the stomach wall and prevents the tube from being pulled out.

External fixation plate: This keeps the PEG in position next to skin. Together with the internal retention disk this prevents the PEG from dislodging.

Clamp: This prevents feed from coming back up the tube.

EnFit End: This is the end into which syringes/ feeding administration sets can be connected to then allow feed, fluids and medications to be administered.

What are the advantages of a PEG tube?

• Cannot be pulled out by young children.
• Long lasting (the tube is made from polyurethane which is compatible with the human body and can last for one to three years).
• Usually easy to insert under general anaesthetic.
• Easy to care for.
• More cosmetically pleasing than a nasogastric (NG) tube.

What are the disadvantages/ complications regarding PEG tubes?

• Requires a general anaesthetic in children for insertion.
• Requires a general anaesthetic to change or remove it.
• The PEG tube is a foreign object in the body and can therefore be associated with infections around the site. Daily cleaning of the surrounding skin helps to prevent this.
• PEG tubes can block if not flushed appropriately (see the section below on tube blockage).
• PEG tubes are not suitable for the administration of ‘blended diet’ (see the ‘common questions’ section below).
• Serious complications related to PEG tubes are very rare and symptoms are seen usually within a maximum of 72 hours after PEG insertion or PEG change. If your child develops any of the red flag symptoms within 72 hours of PEG insertion or change you should contact the paediatric surgery nurse specialist team (the contact number is at the end of this leaflet). The nurse specialist team are available Monday to Friday 08:00 to 18:00 excluding bank holidays. Outside of these hours you should speak to your GP or local hospital who will contact the paediatric surgery specialist registrar at Addenbrooke’s.

The red flag symptoms are:

Administering feed/fluids via a PEG tube

• Your gastrostomy care team (nurse specialists and dietitian) will recommend a feeding plan suitable for your child’s needs and will provide teaching for you on how to administer it. This may be via a pump, by gravity (bolus) feeds or a combination of both.
• It is important to wash your hands carefully prior to and after accessing any gastrostomy tube.
• It is not necessary to check the position of the tube prior to feeding via it unless you are concerned that the tube does not have its normal appearance/ may have dislodged.
• To maintain tube patency (prevent blockage) it is essential that a flush of at least 20ml of water (sterile or cooled boiled water in children aged below one year) is administered after a feed has been given. (Smaller volumes may be used in exceptional circumstances).
• Your gastrostomy care team will teach you how to administer feeds whilst you are in hospital.
• Blended diet must not be administered via a PEG (see the ‘common questions’ section below).

Administering medication via a gastrostomy tube

• Administering medication correctly will avoid the gastrostomy tube becoming blocked.
• Remember to wash your hands prior to and after accessing a gastrostomy tube.
• Remind anyone prescribing medication for your child that the medication is to be delivered via the gastrostomy tube.
• Request that your child’s medication is provided in a liquid form wherever possible.
• Some liquid medications are known to be associated with tube blockages and so need to be further diluted with water (usually a 50:50 dilution – half liquid medication, half water) before being administered via a gastrostomy tube. Ask a member of your gastrostomy care team if you are unsure. Clarithromycin (an antibiotic) is known to irreparably block gastrostomy tubes and therefore we advise avoiding administration of this medication via tube.
• If medication is only available in tablet form, seek advice from your GP/ pharmacist/ nurse specialist on whether tablets can be crushed/ mixed with water and how to make a solution with crushed tablets as tablet particles can lead to tube blockages.
• Ensure the gastrostomy tube is flushed between drugs and with a minimum of 20ml of water after drugs. Use sterile (cooled boiled) water if your child is aged below one year. (Smaller volumes may be used in exceptional circumstances).

General care

Cleaning/ skin care

• Always ensure that you wash your hands before and after caring for your child’s gastrostomy tube.
• The area where the tube goes through the skin is called the stoma site. It is normal to observe a discharge at the stoma site for the first 7-14 days until the stoma heals.
• Daily care of the gastrostomy site and tube will reduce the possibility of soreness or infections. Older children should be encouraged to care for their gastrostomy sites themselves.
• The gastrostomy site should be cleaned at least daily with warm soapy water.
• Always avoid using cream/ powders on the skin around the tube (unless otherwise advised by your care team) as they can damage the tube material and may lead to irritation of the skin and give rise to infection.
• If you notice that the skin is becoming inflamed or there is any pus discharge (oozing) from the site you should contact a member of your gastrostomy care team.
• Dressings around the gastrostomy tube are usually not required (unless advised in specific circumstances where specific dressings for use around a gastrostomy tube will be provided).

Infection

• Cleaning of the gastrostomy site with soapy water will help to reduce the risk of infection. Cleaning should be performed at least daily.
• If you notice that the gastrostomy site is inflamed, red, sore or discharging, contact a member of your gastrostomy care team for advice.

Flushing

• To maintain patency (prevent blockages), the PEG tube should be flushed with a minimum of 20ml of water (sterile or cooled boiled water if child is less than a year old) after feeds. (Your dietitian may advise that you give flush prior to administering a feed to ensure your child’s fluid requirements are met).
• See the section on administration of medicines.

Replacing feeding sets

• We advise that all gravity (bolus) feeding sets are changed every 24 hours. Between each use the tubing should be washed with hot soapy water, rinsed then left to dry.
• Continuous (pump) feeding sets should be discarded 24 hours after first use.

Tube rotation

It is known that some children may be prone to what is called Buried Bumper syndrome. This means that the internal disk of the PEG becomes buried in the stomach wall and the stomach lining grows over it. This makes removing the PEG extremely difficult (for example, when it is due to be changed for a new one, or removed as gastrostomy feeds are no longer required).

To prevent Buried Bumper syndrome, a procedure called tube rotation is performed. The first time that the PEG tube is advanced and rotated should be seven to ten days after the PEG has been inserted. Thereafter, PEG rotation should be performed twice per week. A member of your gastrostomy care team will talk you through this before discharge and a children’s community nurse will teach and support you with PEG rotations until you are confident in undertaking this yourself.

Tube rotation of the PEG tube means pushing the tube into the stomach (advancing the tube), rotating it 360 degrees (a complete circle) and then returning it to its normal position.

Procedure for tube rotation:

1. Wash your hands with soapy water
2. Measure the length of tubing from stoma site to start of Enfit end.
3. Open the fixation catch on the external fixation plate.
4. Detach the tubing from the groove in the fixation plate.
5. Move the fixation plate away from the skin.
6. Clean the tube, fixation plate and stoma area.
7. Push (advance) two to four centimetres of the tube into the stomach.
8. Rotate the tube by turning it in your fingers.
9. Gently pull the tube back until resistance is felt.
10. Place the fixation plate back to its normal position, reinsert the tubing into the groove and close the fixation catch carefully ensuring that both spokes fit completely into their holes.
11. Re measure the length of tubing to make sure that none has been left inside the stomach (if the tube is shorter, undo the fixation plate again and pull back until resistance is felt again).

Common questions

Can I/ my child bath or shower?

Yes, once the site is healed (usually two to four days after insertion) you can bath or shower as normal. Always ensure that the tube end is closed. Dry the area thoroughly afterwards.

Can I/ my child go swimming?

Your child can go swimming again two weeks after the PEG insertion. Make sure the Enfit end is closed and the clamp applied. Some people prefer to coil the tubing under a waterproof dressing whilst swimming.

Will I/ my child be able to move around freely?

Yes. Your child’s gastrostomy tube should not affect or restrict their normal activities.

Where do I get the equipment and supplies?

We will provide you with initial supplies (usually enough to last for one week). You will receive further supplies from your community healthcare team; some areas use a home delivery service. If you have any problems getting supplies at home please ring your nurse specialist who will be able to help you. You should remember to order new supplies in good time before you run out and only use equipment for the length of time specified by the manufacturer.

Will I/ my child be able to go to school?

You/ your child should be able to go to school as normal. Staff at the school can be taught to care for the device and spare supplies will be kept at the school for emergency use.

Can we go on holiday?

• It is fine to travel with your child but it is advised that you discuss travel plans with you doctor/ gastrostomy care team. It may be helpful, particularly if your child has complex needs, to take a letter with you from your care team which can help you if you need to seek medical advice whilst on holiday. In addition letters from your care team can be useful to prevent any problems with airport security when you are travelling with medical equipment.
• Remember to take extra supplies – emergency and replacement set – with you and to pack at least some of these in your hand luggage in case your main luggage goes astray.
• Use a large dressing to avoid getting sand near the stoma site as this can irritate the skin.
• We have a leaflet with advice titled ‘Going on holiday with a gastrostomy/ jejunostomy tube – advice for parents/carers’. Please ask for a copy if you could like one.

If I am/ my child is not using my tube what care is required?

The tube must be flushed at least once per day with a minimum of 20ml of water (sterile water if child is aged below one year).

Can a ‘blended diet’ be given through a PEG tube?

Blended diet, also referred to as ‘liquidised tube feeds’ must not be administered through a PEG tube due to the risk of tube blockage from the blended food and so only prescribed, commercially available enteral feed must be administered. Blocked tubes risk additional general anaesthetics for your child. Use of blended diet via a PEG is also against manufacturer’s guidance as the lifespan of the PEG can be reduced. A reduction in lifespan of a PEG risks the need for an earlier general anaesthetic for your child than would otherwise be necessary. Should you wish to explore the use of a blended diet for your child please liaise with your child’s gastrostomy care team regarding changing the PEG to a balloon retained ‘button’ gastrostomy device. Once a ‘button’ gastrostomy device is inserted, blended diet may be possible depending on your child’s age, diameter of balloon retained tube and if agreed with your child’s care team including the dietitian.

How long will my/ my child’s tube last?

The exact length of time will depend how often your child’s tube is used and what is administered via it but the average length of time is between two and three years.

How is the tube removed?

Whether your tube is being removed because it is no longer needed or whether it is being removed and a new one inserted, you will need to have a general anaesthetic to remove the tube. The tube is removed by an endoscope in the same way as it was inserted.

Problem solving

Tube blockage

To prevent tube blockage the tube should be flushed with water after giving feeds/ medication (see the section on flushing). Always ensure that medications are being administered in a way that limits the chances of tube blockage (see the section on administering medication).

If the tube does block you may try the following. If unsuccessful on the first step, try the next:

• Ensure all clamps are open and the tube is not kinked.
• Try to flush using a pumping action with the plunger on the syringe.
• Connect a 50ml syringe to the end of the tube and try to draw back (aspirate).
• Massage the tube around the area of blockage if it is obviously visible.
• Mix a solution of sodium bicarbonate (baking soda). Mix half a teaspoon of sodium bicarbonate (baking soda) with 30ml of boiling water. Leave this to cool to a warm temperature then use a syringe to flush this solution down the tube. Leave the solution in the tubing for at least two hours (can be left overnight) then flush it through with 20ml of water. If you do not have any sodium bicarbonate, try soda water or pineapple juice.
• Contact a member of your gastrostomy care team. Important: Never use excessive force and never attempt to unblock the tube by inserting objects down it.

Discharge observed from stoma site

It is usual to experience a small amount of clear discharge at the stoma site until the stoma heals (usually 7-14 days after placement). It is important to clean the area carefully during this time. If the discharge is spoiling clothing a small antimicrobial keyhole dressing, designed for use with a gastrostomy tube, can be applied but should be changed regularly, or removed when no longer needed.

Feed leakage from stoma site

• If leakage of feed is seen within the first 72 hours following PEG insertion/ PEG change you should seek advice from the clinical nurse specialist team (see the section on disadvantages/ complications).
• Feed may leak from the stoma because the PEG tube is not being held tightly next to the skin. Check that the external fixation plate is not loose and is lying flat against the skin.
• Leakage from the stoma site can occur because the stomach is too full/ contains gas (see the section on venting).
• If the problem persists you should contact a member of your gastrostomy care team for advice.

Stomach is swollen and/or feels hard: venting (or decompression)

• Some children suffer from trapped wind. This gas can be released by decompressing the stomach via the gastrostomy tube.
• To decompress the stomach, attach a syringe (without the plunger part) to the tube, hold the syringe 10cm above the height of the child’s abdomen and unclamp the PEG. If necessary, aspirate the gas.

Sore skin

• Redness or soreness around the stoma may be the result of gastric leakage.
• Clean and dry the area frequently.
• Call your community nurse if the stoma is persistently red and sore, the stoma emits an odour, the surrounding skin is swollen, pus is observed or there is bleeding from the site.

Overgranulation

Granulation tissue is the result of the body trying to repair itself. You may recognise overgranulation as a clear brownish discharge and occasional bleeding or as pinkish raised tissue. If bleeding occurs or a large amount of tissue builds up, contact a member of your gastrostomy care team for advice as treatment may be needed. Where treatment is required this is most commonly in the form of an ointment.

When sickness and/or stomach cramps occur:

• See the section on venting/ decompression.
• You may need to slow the rate of feeding. Contact your dietitian if this problem continues.
• The feed may be too cold; let the feed reach room temperature before administering it.

When diarrhoea occurs:

• The rate of feeding may need to be slowed down.
• If diarrhoea continues contact your doctor.

When vomiting occurs:

• See the section on venting/ decompression.  You may need to slow the rate of feeding.
• Always check expiry dates of feed.
• The feed may be too cold. Let the feed reach room temperature before administering it.
• If your child continues to vomit and the above simple steps have not helped you should contact your doctor.

Details of your/your child’s percutaneous endoscopic gastrostomy tube

Date of insertion:

Make of tube: Fresenius

Size (French size)

Length (cm) from skin to start of Enfit end:

Useful contact numbers:

Paediatric surgery clinical nurse specialist team

Office: 01223 586973 (Mon to Fri 08:00 to 18:00 except bank holidays)

For emergency queries call 01223 245151 and ask for bleep 152-789

Addenbrooke’s contact centre

01223 245151

Your children’s community nurse___________________________________________

Your dietitian Your home delivery company__________________________________________