Going home with enteral tube feeding

This leaflet is to be read with the relevant information leaflet for your child’s specific tube, for example, gastrostomy.

Support

During your child’s stay in hospital you will be taught how to care for the tube and give your child’s feed and medications.

If your child requires feeding by an enteral feeding pump, you will receive appropriate training to use the relevant pump. If not able to train in the hospital or before admission, it will be provided at home as soon as possible after discharge.

Your child will be referred to the Children’s Community Nursing Team (CCNT) for your area who will be able to provide support with your child’s enteral feeding tube. You will be advised of their normal working hours. If out of normal working hours and urgent, please attend your local Emergency Department, i.e. if the tube displaces.

A Dietitian will monitor your child’s feeding at home – this may be a Dietitian at Addenbrooke’s hospital or at your child’s local hospital.

Supplies

When your child leaves Addenbrooke’s Hospital you will be given a minimum of seven days of equipment and feed to take home unless you have received a home delivery before discharge.

The Paediatric Nutrition Team will either contact your home delivery company (if you are local to Cambridgeshire) or the Paediatric Dietitians for your local area to order ongoing supplies. The home delivery company will deliver all your feed and equipment every 28 days to your home.

The home delivery company should contact you prior to each delivery to check that supplies are still required. It is possible to place your order temporarily on hold, for example if you are finding that you are accumulating supplies or your child is being admitted to hospital. To arrange this, your local Teams can be contacted.

Blocked tubes

• Prevention is always best.
• After each feed or medication it is important to immediately flush the feeding tube with water to prevent the tube from blocking. The volume required will depend upon the type and size of tube your child has.
• Please refer to the individual leaflet for your child’s specific tube for advice on dealing with blocked tubes

Contacts / further information

Paediatric Nutrition Nursing Team (Addenbrooke’s)

Monday to Friday 09:00 – 15:00

Telephone: 01223 274826

Addenbrooke’s dietitians: 01223 216655

Children’s community nursing team for support with NG care contact . . . . . . . . . . . . . . . . . . . . . . . . . . . on . . . . . . . . . . . . . . . . . . . . . . . . . . .

Working hours

• Weekdays (Monday – Friday) . . . . . . . . . . . . . . . . . . . . . . . . . . .
• Weekends and Bank holidays . . . . . . . . . . . . . . . . . . . . . . . . . . .

Home delivery company to change delivery arrangements, to place order on hold, to return pump / supplies or for 24 hour helpline for pump queries please contact: . . . . . . . . . . . . . . . . . . . . . . . . . . . on . . . . . . . . . . . . . . . . . . . . . . . . . . .

To make changes to your child’s order please contact your:

• Local dietitian for changes to feed / equipment order

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• Children’s community nursing team for changes to equipment order

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Water

Cooled, boiled water must be used for all continuous feeds, for children under the age of one year, where there is concern about a child’s immunity and for all jejunal feeds (where the child is fed directly into the small bowel). Cooled, boiled water may be stored in a clean, covered container in the refrigerator for up to 24 hours.

Tap water: under most other circumstances tap water may be used as a flush. Run the tap for a few minutes to ensure water is fresh and place in a clean cup. Do not use filtered or bottled water as this may have been standing / opened for a period of time.

Administering medications through feeding tubes

• Ideally all medications given via feeding tubes should be in liquid form.
• Please check with your nurse, doctor or pharmacist before administering any medications via a feeding tube as not all medications can be given via this route.
• To avoid blocking feeding tubes, thick liquids should be diluted with equal amounts of water before administering.
• Please check if you are dispensed tablets that these can be crushed or dissolved in water before administering and that the medication is completely dissolved to prevent blocking the tube. Tablets that are enteric coated or state that they are sustained, prolonged or modified sustained release must not be crushed.
• Do not mix medications together.
• Before and after each medication, the feeding tube must be flushed with water – the amount will be dependent upon each individual tube and the age of your child. This will be discussed with you prior to discharge.

If your child’s requirements increase, any changes will need to be made either through your local Community Nurse or Dietitian. Your Nutrition Team will advise you on who this is.

If your child has been issued with an enteral feeding pump, this will have been registered to your child but remains the property of the feeding company. These supplies are purely for use at home. If your child is admitted to hospital, then the hospital should supply a pump, feed and equipment.

Equipment

Most equipment is designed for single use only and should be discarded after use. Items displaying this symbol are for single use only. Please refer to the section on feeds for how often a giving set should be changed.

Reusable syringes are designed for multiple uses at home. In between uses the plunger can be removed from the syringe and the two parts can be washed. Place the syringe in warm, soapy water and pull the plunger back and forth several times before removing the plunger from the syringe. Rinse the syringe thoroughly and allow to dry, then store in a Tupperware box for future use.

For children under the age of one year or where there is a concern about the child’s immunity these syringes can be sterilised in between uses. Please refer to manufacture information leaflet, which you will have been provided.

Please observe syringes for signs of wear, for example, cracks, markings on the syringe wearing off, the plunger becoming stiff to use. Report any problems to your community nurses.

• Before using any equipment it is important to check the packaging for any signs of damage and expiry dates. The expiry date will be indicated next to or below this symbol.

Feeding via an enteral feeding tube

Feeding may be continuous over several hours or as bolus feeds for shorter periods of time. This may be administered via an enteral feeding pump or via a gravity bolus set / open syringe. Some children may have a combination of both. Your dietician will formulate a plan. It is important that your child’s head and shoulders are elevated at 30 - 45° for the duration of the feed and for one hour afterwards.

Pump feeding

If your child is to be fed via an enteral feeding pump, training will be arranged prior to discharge. The enteral feeding pump provided is determined by your GP’s postcode, so this may be different to the one used in Addenbrooke’s. The pump training will either be provided by an Enteral Nurse trainer or the Paediatric Nutrition Nursing Team from the home feeding company. It may be possible for the enteral pump trainer to visit your home either before the feeding tube is placed (if known in advance) or once your child has been discharged to provide refresher training. An instruction manual is provided with each pump. The risks associated with continuous feeding will be assessed and discussed with you by the dietitian. Each home delivery company has a 24 hour helpline for pump related problems.

Bolus feeding

• Check tube position if necessary before administering any feed.
• If using a bolus set, ensure roller clamp is ‘clamped off’ and attach to the feeding tube. Pour the feed into the set and then unclamp.
• If using an open syringe, attached syringe to feeding tube. Pour feed into syringe.
• Allow the feed to be delivered slowly over 15 minutes.
• When feed is complete, administer a water flush and then disconnect the feeding set.

Feeds

Your feed will be provided either in a ready-made preparation or a powdered feed.

Ready-made feeds (bags, bottles, cartons, etc.)

A new giving set is required for every new feed session. The feed and giving set can stay in place for up to 24 hours if remained attached to the feeding tube. If disconnected a new giving set must be used for the next feed. It may be necessary to decant a bolus feed into a reservoir for a feed and then the remainder can be placed in a refrigerator for up to 24 hours. Two-way connectors are available to enable two bags to be attached to the giving set for one feed session.

Powdered feeds

Your dietitian will advise you on how to make and store your child’s powdered feed. Continuous powdered feeds can only be kept for four hours at room temperature. Every four hours fresh feed must be added to a new reservoir and giving set.