Paediatric Enteral Tube Feeding Guidelines

Assessment should include the following:

• A multidisciplinary approach which may include a paediatrician, paediatric dietitian, speech and language therapist, paediatric nurse, community children’s nurse, paediatric psychologist and family.
• Nutritional assessment: ensure weight, length/height, BMI and growth history are documented and dietary assessment completed
• Method of feeding, type of feed and feeding regime to suit CYP’s and families lifestyle.
• If longer term feeding is required, the consultant paediatrician should refer to the Specialist Paediatric Gastroenterology Team RHCYP, NHS Lothian.
• Identification of risks (including minimising risks) with appropriate training to support.

Refeeding syndrome is a potentially fatal condition that occurs when patients whose nutritional intake has been severely restricted then are given nutrition via oral, enteral or parenteral routes. Sudden reversal of prolonged starvation by the reintroduction of nutrition leads to rapid shifts of electrolytes back into cells from which they had, during starvation, been leached out. Phosphate, potassium and magnesium levels can fall very rapidly within the first week of refeeding, with neurological and cardiovascular consequences: this is known as the refeeding syndrome. The resulting effects, most notably cardiac compromise, can be fatal. Respiratory failure, liver dysfunction, central nervous system abnormalities, myopathy and rhabdomyolysis are also recognised complications and patients are at risk of vitamin deficiencies. Refeeding syndrome usually occurs within 72 hours of beginning refeeding, with a range of 1–5 days, but it can occur late in the most malnourished.

Identifying those at risk of Refeeding Syndrome

CYP who are at risk of refeeding syndrome include those with one or more of the following symptoms below:

• Weight for height < 75% / Chronically undernourished
• Minimal or no nutritional intake for more than 3-4 days.
• Weight loss of 15% or more in the last 3 months (shorter timeframe for young/lower starting weight)
• Significant sustained losses i.e. malabsorption, vomit.
• Abnormal blood levels of sodium, potassium, magnesium, phosphate and calcium prior to feeding
• Bradycardia / QT prolongation >460ms

There are no evidence based practice guidelines for feeding infants and children at risk of re-feeding syndrome. However, literature suggests that in the majority of patients an overly cautious approach is unnecessary. Close monitoring is required, especially in high risk patients.

Management of those at risk of Refeeding Syndrome

For CYP at risk of feeding:

• Check serum electrolytes prior to commencing feeding and consider correcting any abnormalities. Monitor electrolytes daily over the first days/weeks (replacing as required), until stable. In high-risk patients, bloods may be required 12 hourly initially (particularly if showing derangement). For further advice on electrolyte replacement, see NHS Borders guidance: Electrolyte Deficiency Guidance.
• Appropriate vitamin and mineral supplementation should be started prior to feeding and continued for the first 10 days of feeding: Thiamine and Forceval/Abidec.
• A feeding plan will be co-ordinated by the dietitians and will reflect the patient’s feeding route and refeeding risk, increasing calorie intake slowly. In high-risk patients, a more cautious approach to initiating feeds may be required.

Out of Hours Regime

If a patient is admitted for enteral tube feeding out of hours, please follow the Initiating naso-gastric tube feeding Out of hours Regime. This also includes advice on initiating feeds for those CYP at risk of re-feeding syndrome. See Appendix 1 and 2.

Admission of Child or Young Peron with an Enteral Feeding Tube

Please refer all CYP with an enteral feeding tube to the paediatric dietitians on admission. See Appendix 3.

Nasogastric (NG) tube feeding:

This is when feed is given through a fine tube, which has been passed through the nose into the stomach.

Orogastric (OG) tube feeding:

This is when feed is given through a fine tube, which has been passed through the mouth into the stomach.

The current manufacturer of fine bore feeding tube we use in NHS Borders is the Nutricare – ISOSAF long term feeding tube. These tubes cannot be repassed if they are removed.

Ryles tubes should not be used for enteral feeding but for gastric drainage only. These should only be left in situ for 7-10 days as the tube can become brittle and cause ulceration to the back of the throat and the gullet.

Other tubes types such as a nasojejunal (NJ) tube may be used however; these tubes would only be placed in endoscopy or in theatre and not on the ward.

Passing the Nasogastric Tube (NG)

Procedure for passing and checking nasogastric tube position

Complete the 5 moments of hand hygiene before and after the procedure

Equipment required for the procedure:

• Prepared selected nasogastric tube.
• Lubrication gel (if required)
• 60mls enteral syringe
• pH indication strip
• Sterile water for flushing (inpatient)
• Hydrocolloid dressings
• Tapes to secure tube to face (check for any allergies)
• Glass of water/juice (if appropriate)

Preparation prior to passing the Nasogastric Tube (NG)

• Passing a nasogastric tube can be distressing to a child/young person and slightly uncomfortable. They should be told where the tube is going to, why the tube is needed and what sensations they might feel as the tube is being passed (if appropriate).
• Babies can be wrapped in a blanket or towel to help keep them secure and laid flat on their back (unless another adult is available to assist holding the child). Older children may prefer to sit up with their head tilted slightly forward: if this is not possible, lie them down on their back with their face looking upwards

The Procedure

1. Ensure everything has been collected and is near to hand.
2. Explain to the child/young person/parents that you are going to pass the nasogastric tube and obtain consent.
3. Wash and dry hands thoroughly (5 moments of hand hygiene)
4. Ensure there is no contraindication to nasal tube insertion. Check the nostril to see if either is blocked and choose the cleanest. Ask the patient, if age appropriate, to gently blow their nose clearing any mucus away.
5. Determine the length of tube to be inserted using NEX measurement Nose-Ear-Xisiphisternum). Measure the tip of the tube from the nose, extend the tube across to the earlobe and then down to the xisphisternum. Note the length as per measurements on the tube, keep your fingers at this length or mark it with a pen.
6. Ensure end cap is firmly in place on the end of the tube, to prevent leakage of gastric contents
7. Wet the tip of the tube if required, with some cooled boiled/sterile water or lubricating gel.
8. Insert the top of the tube into the chosen nostril, slide backwards along the floor of the nose.
9. If there is any obstruction, pull the tube back, turn it slightly and advance tube again. If obstruction is felt again try the other nostril. As the tube passes to the back of the nose, ask the child or young person to take sips of water (if allowed) to help the tube go down or in the case of a baby offer them a dummy if they have one.  If at any time the CYP starts coughing or their colour changes STOP the procedure immediately and remove the tube
10. Advance the tube until you reach the point where the tube was measured
11. Secure the tube in position using a barrier product such as hydrocolloid dressings to protect the skin and tapes.
12. Check the tube is in the correct position:
    1. Attach a 60mls enteral syringe to the end of the tube and gently withdraw a small amount of stomach contents.
    2. Syringe a drop of the content onto the pH indicator strip, too much stomach contents will give an unreliable reading. The strip should change colour to read pH 5.5 or below, this indicates the tube is in the stomach.
13. If using a guidewire containing tube remove guidewire, as per manufactures guideline and close access port.
14. When the position of the tube has been confirmed, flush the tube with the recommended amount of cool boiled/sterile water. A 60mls enteral syringe should be used. If the CYP starts coughing or vomiting during the flush, stop, and restart once they have settled. If they continue stop and seek advice from the medical team.
15. Ensure documentation is completed (including; make, size and length of tube used, pH reading, observed length of tube at the nose).
16. Dispose of waste in line with local policy.
17. Wash and dry hands thoroughly (5 moments of hand hygiene).         

The position of the tube should be confirmed after passing it and prior to using it for administering any feed, medications or water flushes (see flow chart on page 11).

Passing the Orogastric Tube (OG)

Procedure for passing and checking orogastric tube position

Complete the 5 moments of hand hygiene before and after the procedure

Equipment required for the procedure:

• Prepared selected orogastric tube.
• Lubrication gel (if required)
• 60mls enteral syringe
• pH indication strip
• Sterile water for flushing (inpatient)
• Hydrocolloid dressings
• Tapes to secure tube to face (check for any allergies)
• Glass of water/juice (if appropriate)

Preparation prior to passing the Orogastric Tube (OG)

• Passing an orogastric tube can be distressing to a child/young person and slightly uncomfortable. They should be told where the tube is going to, why the tube is needed and what sensations they might feel as the tube is being passed (if appropriate).
• Babies can be wrapped in a blanket or towel to help keep them secure and laid flat on their back (unless another adult is available to assist holding the child. Older children may prefer to sit up with their head tilted slightly forward: if this is not possible, lie them down on their back with their face looking upwards

The Procedure

1. Ensure everything has been collected and is near to hand.
2. Explain to the child/young person/parents that you are going to pass the orogastric tube and obtain consent.
3. Wash and dry hands thoroughly (5 moments of hand hygiene)
4. Check the mouth to ensure it is clear.
5. Determine the length of tube to be inserted. Measure the tip of the tube from the lips, extend the tube across to the earlobe and then down to the xisphisternum. Note the length as per measurements on the tube, keep your fingers at this length or mark it with a pen.
6. Ensure end cap is firmly in place on the end of the tube, to prevent leakage of gastric contents
7. Wet the tip of the tube if required, with some cooled boiled/sterile water or lubricating gel.
8. Direct tube to the back of the tongue, then direct downwards through the oropharynx.
9. Advance the tube until you reach the point where the tube was measured
10. Secure the tube in position using a barrier product such as hydrocolloid dressings to protect the skin and tapes.
11. Check the tube is in the correct position:
    1. Attach a 60mls enteral syringe to the end of the tube and gentle withdraw a small amount of stomach contents.
    2. Syringe a drop of the content onto the pH indicator strip, too much stomach contents will give an unreliable reading. The strip should change colour to read pH 5.5 or below, this indicates the tube is in the stomach. If using a guidewire containing tube remove guidewire, as per manufactures guideline and close access port.
12. When the position of the tube has been confirmed, flush the tube with the recommended amount of cool boiled/sterile water. A 60mls enteral syringe should be used. If the child/young person starts coughing or vomiting during the flush, stop, and restart once they have settled. If they continue stop and seek advice from the medical team.
13. Ensure documentation is completed (including; make, size and length of tube used, pH reading, observed length of tube at the mouth).
14. Dispose of waste in line with local policy.
15. Wash and dry hands thoroughly (5 moments of hand hygiene).

The position of the tube should be confirmed after passing it and prior to using it for administering any feed, medications or water flushes (see flow chart).

Checking the Position of the Nasogastric / Orogastric tube

• Wash your hands before and after the procedure.
• Explain to the child/young person/parent that you are going to check their tube.
• Note the position of the tube using the tube markers.
• Remove the end cap from the tube.
• Attach a 60ml enteral syringe to the end of the tube unless contraindicated by manufacturer’s instructions.
• Aspirate the gastric contents from the child or young person’s stomach by gently pulling back on the plunger until a small amount of fluid appears in the syringe.
• Detach the syringe from the tube remembering to replace the end cap of the tube
• Test the pH of the fluid using pH indicator paper or strip. The indicator paper or strip should change colour to read a pH of 5.5 or less.
• A reading of a pH of 5.5 or less is very important. The tube position should always be checked before every use.
• Be aware that some medications can alter the pH. If this is the case, this should be documented in the child’s record.

If it is Difficult to Obtain Aspirate

If you are unable to obtain an aspirate, try again after attempting the following:

• Check the length of the tube at nose is the same as it has been previously recorded. If the tube has just been placed, try advancing by a further few centimetres and try again. Remember to document the observed length of the repositioned tube and tape it securely.
• Lie the child/young person on their left side and then retry aspirating the tube
• Ask the child/young person to take a small drink, if allowed, then try to aspirate the tube
• Gentle plunge a small amount of air into the nasogastric tube (via a syringe) as the end of the tube may be lying against the stomach wall. Do not use air to determine if the tube is in the correct position.
• If the child or young person has recently had a feed, leave checking the pH for a further 30mins.

If you are still unable to obtain an aspirate to confirm the position of the tube:

• Remove and re-pass the tube or seek further advice from community or hospital professionals
• If re-passing the tube, confirm the correct position of the tube with an aspirate, then flush the tube with recommended amount of cool boiled/sterile water.

Preventing a Blockage of Nasogastric and Orogastric Tube

NG and OG tubes do occasionally block. This is often caused by medicines or feed accumulating in the tube. To help prevent this ALWAYS FLUSH the tube before and after feed or medication.

Clean the feeding port with cooled boiled water and cotton tip applicator as part of preventative care.

Tube Blockage for Nasogastric and Orogastric Tube

If unable to obtain a pH, do not attempt to unblock the NG tube with water.

The tube will require to be removed and repassed.

Frequency of Checking the Nasogastric / Orogastric Tube Placement

Check and document the tube position:

• Following the initial tube insertion
• Before commencement of each feed (bolus or continuous feeds)
• Before medications are administered
• Following tape changes
• Following evidence of tube displacement, e.g. loose tape, the visible tube appears longer or the position mark at the nostril has changed
• Following episodes of vomiting, retching or coughing, or complaints of reflux
• Following oropharyngeal suction
• If the child or young person develops signs of respiratory distress

Frequency of Changing Nasogastric / Orogastric Tube 

• Follow manufacturer’s guidance
• Tubes should not be re-used.
• Only tubes licensed for feeding should be used

Care of the Infant or Child with a Nasogastric / Orogastric Tube

• Regular mouth care
• Use of barrier spray for skin integrity when changing tapes
• Alternate nostrils

Removal of the Nasogastric / Orogastric Tube

• Explain the procedure to the CYP (if appropriate)
• Place a towel or clinical sheet across the chest
• Remove in 1 continuous motion
• Offer the patient mouthwash (unless nil by mouth) or oral hygiene
• Dispose of tube in normal clinical waste

*Locally a 60mls syringe will be used to obtain aspirate.

Flow chart taken from:

• National Patient Safety Agency (2005): Reducing the harm caused by misplaced nasogastric feeding tube 05, 21/02/05. As cited in NHS Lothian Teaching Guidelines on Passing and Caring for a nasogastric and orogastric tube.

Caution: If there is ANY query about position and/or the clarity of the colour and change on pH indicator strip, particularly between ranges 5-6, then feeding should not commence. Seek advice from the medical team.  

Nasojejunal (NJ) feeding is when feed is given through a fine tube, which has been passed through the nose, out through the stomach and into an area of the small bowel called the jejunum. A child/young person may require an NJ feed if they are not able to tolerate feeds going into their stomach (e.g. vomiting) and/or they may be having problems with their chest (e.g. aspirating their feed).

A long-term nasogastric tube of a longer length than is required to feed into the stomach with or without a weighted end, is passed in x-ray under fluoroscopic guidance (usually in theatre or in the endoscopy unit). NJ tubes are not routinely placed in children and young people in NHS Borders.

Confirmation of Nasojejunal (NJ) Tube Position

• The position of a NJ tube can only be confirmed radiologically. The pH of the small bowel is ≥ 6 so aspirate cannot be used to confirm the position of the tube.
• Apart from Radiology, there is no reliable means of confirming NJ tube position.
• The tube should be secured in position using a barrier product such as hydrocolloid dressings to protect the skin and transparent films.

Frequency of Checking Nasojejunal (NJ) Tubes Position

• Check the length of the external tubing at the nostril daily and record the centimetre marking on the enteral feed record following tube placement and before administering feed / water / medications.
• Tube migration or misplacement should be considered if the child or young person:
  • Is vomiting milk feed
  • Is showing signs of aspiration
  • Has abdominal distension
  • Has worsening diarrhoea
  • If fluid aspirated from the tube is testing acid on pH paper
  • If the tube appears longer or shorter than previously measured

If any of the above are observed the child/young person should be referred for an    x-ray to check tube position.

Administering Feeds via a Nasojejunal (NJ) Tube (PUMP FEEDING)

• Nasojejunal (NJ) feeds should ALWAYS be given by a FEEDING PUMP and never as a bolus.
• Complete 5 moments of hand hygiene before and after procedure.
• The child/young person should be in a sitting position. If this is not possible, their head should be elevated by at least one pillow. For babies, place the pillow underneath the top of the mattress.
• Although the child/young person is not receiving feed into their stomach, anymore the stomach produces juices that can build up in the stomach, which may cause the child/young person to retch or vomit. A nasogastric tube may be passed to allow for drainage.
• If the child/young person has a nasogastric tube for drainage, attach the drainage bag to the nasogastric tube when the feed commences.

If the child/young person starts vomiting milk feed or you see milk in the gastric drainage bag, feeds should be stopped and contact the medical team for advice as this may be a sign of tube migration or misplacement.

Administering Medications via an Nasojejunal (NJ) tube

• Not all medication can be given down the NJ tube. It is important to check with the medical team or pharmacist if the child/young person’s medicine is suitable to be given this way.
• All medication should be in a liquid or dispersible form.
• Medications should never be mixed together as they may react with one another.
• The NJ tube must be flushed before and after each medicine with the recommended amount of water.
• Clarithromycin, which is an antibiotic commonly used to treat chest infections, should never be given through a NJ tube as it will block it. There are other antibiotics with similar sounding names (for example Azithromycin) that do not block NJ tubes.

There are a variety of gastrostomy tube types which can be held in place with either a bolster or a balloon.

The main types of gastrotomy tube feeding in CYP locally are:

• Percutaneous Endoscopic Gastrostomy (PEG) Tube
• Low Profile Button Device

The aftercare of the different types of tubes may vary.

Percutaneous Endoscopic Gastrostomy (PEG) Tube

A Percutaneous Endoscopic Gastrostomy (PEG) tube is a flexible polyurethane tube placed into the stomach using an endoscope and then taken out through the stomach wall. It is secured in place inside the stomach and held against the skin by a fixation device. The PEG tube allows liquid feed, water or medication to be delivered directly into the stomach. Serious complications are rare and symptoms are seen usually within a maximum of 72 hours after PEG insertion.

Care Following Initial Stoma Formation 

• Following initial formation of the stoma there may be slight bleeding from the wound.
  • The stoma should be left undisturbed for 24 hours.
  • Carry out hand hygiene in accordance to the 5 moments of hand hygiene principles.
• For the first 3-4 days post PEG insertion, sterile water and gauze should be used to clean the stoma site. Following discharge to home, clean the stoma site with a clean cloth and unscented soap and water.
• The stoma is still forming a tract during the first 14-21 days. To reduce the risk of bacterial entry to the peritoneum the whole area should NOT be submerged in water therefore the child/ young person should not have a bath or go swimming.
• Showers are acceptable.
• Wash the stoma site prior to rest of the body.
• No swimming for 6 weeks
• Care must be taken when adjusting the external fixator within two weeks following the tube insertion.
• To adjust - seek advice from CCN or Nutrition Nurse Specialist at RHCYP Edinburgh. Leave at least a 2mm gap between the skin surface and the fixator.
• If there is pain on feeding, leakage of fluid around the tube, or new bleeding within first week of insertion, STOP FEED IMMEDIATELY and contact medical team.

Daily Stoma / Tube Care 

• Clean the area with a clean cloth and unscented soap and water, rinse and dry thoroughly.
• Do not use moisturising creams or talcum powder around the stoma site.
• The external fixator should not be moved for the first 4-6 weeks post procedure. Refer to the manufacturer’s guidelines. After 4-6 weeks, once a week, the external fixator should be moved and the tube should be moved in and out by a maximum of 2-3cm. This prevents “buried bumper syndrome”, a rare but important complication in patients with a PEG tube.
• Rotate the tube 360^o and reposition the external fixator daily, leaving a space of at least 2mm to allow slight movement. PEG tubes can be rotated from day one post procedure.
  
  4-6 weeks after the placement of the PEG tube
• On some PEG tubes, the fixation cover can be separated from the base to allow further cleaning of this part of the tube.
• Once the fixation cover is separated, gently pull the PEG tube until you feel resistance, this will ensure the internal part of the tube is lying against the stomach wall.
• Once this is done, reposition the external fixation cover.
• Do not position the fixation cover too tight as it can be uncomfortable and may damage the skin.
• If there is pain on feeding, leakage of fluid around the tube, or new bleeding within first week of insertion, STOP FEED IMMEDIATELY and contact the medical team.

 Stoma Problems - Infection

• Infection can be minimised by scrupulous hygiene of the stoma site.
• Avoid occlusive dressings as these can encourage and trap moisture.
• Yeast infections can cause a leaking feeding port, or degradation of the tube, if this is suspected, a gastric aspirate should be obtained, sent to microbiology and treated by prescribed antifungals for 10 days. Discuss further with GI nurse specialist at RHCYP Edinburgh.
• If infection is resistent to treatment, discuss with GI Nurse specialist at RHCYP Edinburgh as topical therapy may not always be effective. If patient takes Domperidone, they cannot have Fluclonazole, but high dose Nystatin.

Stoma Problems – Overgranulation

• This can result from the body trying to close the gastrostomy site or from insufficient rotation of the tube or too much movement within the tract.
• Consider the use of an absorptive dressing such as Tegaderm Foam or Lyofoam, as the primary dressing if no improvement Klinderm silicone no border dressing could be used. The dressing of choice should be used for a minimum of 2-weeks to determine if it has been effective.
• A Steroid-based, Antibiotic or Antifungal cream may be prescribed e.g. Maxitrol eye ointment, Fucidin H or Timodine.

- If no improvement after the above treatment, seek advice from GI Nurse Specialist at RHCYP Edinburgh.

Leakage Around Gastrostomy Site 

Consider the following:

• Check for infection by taking a swab of the stoma site and treat accordingly.
• Check the internal fixator is against the inner gastric wall by gently pulling the tube outwards until resistance is felt, and ensuring the external fixator is close to the skin, leaving a space of about 2-3mm to allow slight movement.
• The French Gauge of the tube may be incorrect. Discuss with the GI Nurse Specialist at RHCYP Edinburgh.
• Consider the use of barrier preparation e.g. Cavilon, in conjunction with a foam dressing such as Tegaderm Foam or Lyofoam.

Frequency of Changing PEG Tubes

• When a tube has been placed, document the approximate date for the next replacement. Check the manufacturers’ recommendation. Discuss with the GI Nurse Specialist at RHCYP Edinburgh.

As a guide the following should apply:

-  Gastrostomy tube with internal retention bolster: change if required or clinically indicated.

- Low profile devices (internal retention bolster): approximately 24 months

- The life span of a tube can vary depending on medications and stomach acidity.

Replacing the Corflo PEG Y-adaptor

• NHS Borders uses Corflo gastrostomy tubes as its standard gastrostomy tube. Occasionally the Y shaped end of the tube can split and needs to be replaced. This can avoid the need to replace the gastrostomy tube.
• CYP who are in the community should have a spare PEG end and they or their parents/carers will often be trained in how to replace them.

What to do when a gastrostomy tube falls out

• If PEG tube falls out, a clean dressing should be placed over the site to stop the leakage of any fluid from the stomach.
• CYP should attend A&E at RHCYP Edinburgh, as early replacement is essential.

Other problems

• Parents / carers should be aware of the need to report problems of vomiting, diarrhoea, constipation, abdominal distension, cramps, nausea or dehydration, weight loss or rapid weight gain; these factors may indicate a need to alter the child/young person’s feeding regimen, dietary intake, medication regime or may indicate that a medical assessment is required by a Paediatric Consultant or GP.
• If the child/ young person is bloated or retching, this can be relieved by opening the PEG tube to release air or food from the stomach.
• If the gastrostomy tube blocks, clean the feeding port with water and cotton tipped applicator, then try flushing the tube again. If this doesn’t work, attempt to flush the gastrostomy tube with warm water and leave for 30 minutes. DO NOT use excessive pressure when flushing.
• PEG tubes and extension sets can become blocked if there is an accumulation of medicines or feed in the tube. To help prevent this, advise to flush the tube before and after each feed/ medication with cooled boiled water or sterile water if an inpatient.
• If the PEG tube remains blocked seek further medical advice.

There are a variety of gastrostomy tube types which can be held in place with either a bolster or a balloon.

The main types of gastrotomy tube feeding in CYP locally are:

• Percutaneous Endoscopic Gastrostomy (PEG) Tube
• Low Profile Button Device

The aftercare of the different types of tubes may vary.

Low Profile Button device

This is a specially designed silicone feeding tube that is inserted into the stomach through the abdominal wall. This allows liquid feed, water or medication to be delivered directly into the stomach. It is secured in place by an internal inflatable balloon at one end and an external base at the other. The child/ young person would be measured and fitted for the appropriate size of tube by a healthcare professional.

If the button is placed as the first gastrostomy tube, it will have sutures which should be removed 5-7 days post procedure by a ward nurse if being removed prior to discharge from the ward or a community nurse if at home. Water in the balloon should be changed to ensure the integrity of the balloon prior to the removal of the sutures. The sutures secure stomach wall to the abdominal wall to allow the stoma to be formed.

Care following initial stoma formation 

• Following initial formation of the stoma there may be slight bleeding from the wound and when sutures are removed.
• The stoma should be left undisturbed for 24 hours.
• Carry out hand hygiene in accordance to the 5 moments of hand hygiene principles.
• Clean the stoma site with saline using an aseptic technique for the first 48 hours. Thereafter, use a clean cloth and water and dry thoroughly.
• Serious complications related to gastrostomy tubes are rare and symptoms are usually seen within 72 hours after insertion or tube change. Symptoms to look out for between 3-5 days post insertion or change include:

- Pain or distress on feeding

- Fresh bleeding from the gastrostomy tract

- Leakage of feed around the tube.

If any of the above occur in the first week post insertion, parents should be advised to call for advice. If within office hours, parents should call their CCN or GI nurse at RHCYP Edinburgh for advice and if after hours or over weekends contact A&E at RHCYP Edinburgh on 0131 312 0007.

• During the first 14 days the patient should not have a bath or go swimming, to reduce the risk of bacterial entry to the peritoneum.
• Swimming is not advised for 6 weeks post insertion.
• Showers are acceptable.
• Wash the stoma site prior to the rest of the body.

Daily Stoma / Tube Care

• Clean the area around the stoma site with a clean cloth and unscented soap and water, rinse and dry thoroughly.
• Do not use moisturising creams or talcum powder around the stoma site.
• Rotate the gastrostomy tube 360^o daily, this helps prevent the tube sticking to the surrounding skin.
• Clean the feeding port with cooled boiled water using a cotton tipped applicator.

Stoma Problems – Infection

• Infection can be minimised by scrupulous hygiene of the stoma site.
• Avoid occlusive dressings as these can encourage and trap moisture.
• Yeast infections can cause the balloon to burst or a leaking feeding port, if this is suspected, a gastric aspirate should be obtained, sent to microbiology and treated by prescribed antifungals for 10 days. The tube should be replaced on day 8 of the treatment. Discuss further with GI nurse specialist at RHCYP Edinburgh.
• If infection is resistent to treatment, discuss with GI Nurse specialist at RHCYP Edinburgh as topical therapy may not always be effective.
• If patient takes Domperidone, they cannot have Fluclonazole, but high dose Nystatin

Stoma Problems – Overgranulation

• This can result from the body trying to close the gastrostomy site or from insufficient rotation of the tube or too much movement within the tract.
• Consider the use of an absorptive dressing such as Tegaderm Foam or Lyofoam, as the primary dressing if no improvement Klinderm silicone no border dressing could be used. The dressing of choice should be used for a minimum of 2-weeks to determine if it has been effective.
• A Steroid-based, Antibiotic or Antifungal cream may be prescribed e.g. Maxitrol eye ointment, Fucidin H or Timodine.
• If no improvement after the above treatment., seek advice from GI Nurse Specialist at RHCYP Edinburgh.

Leakage Around Gastrostomy Site 

Consider the following:

• Check for infection by taking a gastric aspirate and send to microbiology then treat accordingly.
• Check the balloon is still patent and inflated.
• The French Gauge of the tube may be incorrect. Discuss with the GI Nurse Specialist at RHCYP Edinburgh.
• Consider the use of barrier preparation e.g. Cavilon, in conjunction with a foam dressing such as Tegaderm Foam or Lyofoam.

Frequency of Changing Tubes

When a tube has been placed, document the approximate date for the next replacement. Check the manufacturers’ recommendation. As a guide the following should apply:

• 3-6 months’ post insertion/ tube change.
• The life span of a tube can vary depending on medications and stomach acidity.

What to do When a Gastrostomy Tube Falls Out

• Please refer to child’s individual gastrostomy care plan which advises to cover the site with a gauze swab and tape. Stomach contents can come out of the tract which is normal.
• Ensure that the child and family carry a spare feeding tube with them which is the correct type and size or if available an Enplug which is the correct type and size.
• If a gastrostomy tube falls out then it should be replaced or if available, an Enplug inserted as soon as practicable, preferably within 6 hours, or the stoma will start to close.
• If a tube is displaced within the first 6 weeks post insertion, nothing should be inserted and the child should attend A&E at RHCYP Edinburgh for it to be replaced.
• Parents and carers will be trained by the CCN to replace their child’s tube if they choose to do this.
• If there is any problem or parents are unable to reinsert the tube and it is within office hours, parents should contact their CCN. Out with office hours then the child must come to Ward 15, BGH

Frequency of Checking the Balloon in Balloon-retained Tubes

• This is usually done weekly but follow the manufacturer’s guidelines.
• Remove old water from the balloon and replace with fresh water (according to manufacturer’s guidelines) using two separate sterile luer slip syringes.
• For inpatients, replace the water in the balloon with sterile water and for the child in their own home, replace with cooled boiled water in a separate luer slip syringe.
• Ideally check the balloon on the same day each week.
• Ensure that the balloon port is kept clean.

Unable to Remove Water from Balloon 

• Check that Luer Slip syringe is attached firmly to the balloon port.
• Try again, and if unsuccessful parent/ carer to contact CCNs during office hours or A&E at RHCYP Edinburgh.

Other Problems

• Parents / carers should be aware of the need to report problems of vomiting, diarrhoea, constipation, abdominal distension, cramps, nausea or dehydration, weight loss or rapid weight gain; these factors may indicate a need to alter the child/young person’s feeding regimen, dietary intake, medication regime or may indicate that a medical assessment is required by a Paediatric Consultant or GP.
• If the child/ young person is bloated or retching, this can be relieved by attaching an extension set and the barrel of a 50ml syringe, opening the clamp which will release air/ food from the stomach.
• If the low profile gastrostomy tube blocks, clean the feeding port with water and cotton tipped applicator, then try flushing the tube again. If this doesn’t work, attempt to flush the gastrostomy tube with warm water and leave for 30 minutes. DO NOT use excessive pressure when flushing. If the low profile gastrostomy tube remains blocked, this must be changed by someone competent to do so.
• If there is a blockage in the extension tube, replace with a new one.
• Gastrostomy tubes and extension sets can become blocked if there is an accumulation of medicines or feed in the tube. To help prevent this, advise to flush the tube before and after each feed/ medication with cooled boiled water or sterile water if an inpatient.

The use of jejunal or post pyloric feeding, where feed and fluid is delivered directly into the small intestine (jejunum) and is only indicated in certain clinical conditions (including aspiration, gastroparesis, gastric outlet obstruction or previous gastric surgery precludes gastric feeding or when early postoperative feeding after major abdominal surgery is planned).

Insertion of a jejunostomy feeding tube would take place in RHCYP Edinburgh by the specialist GI team. NHS Borders staff will be involved in the post-operative and supporting local care in collaboration with NHS Lothian.

There are different options of jejunostomy feeds available:

• Percutaneous Endoscopic Gastro-Jejunostomy (PEG-J) tube
• Gastrojejunostomy (GJ) tube (non low profile or low profile options)
• Low profile roux-en y jejunostomy tube

PEG-J, GJ and low profile roux-en y jejunostomy tube feeds should ALWAYS be given by a feed pump and never as a bolus.

• Feeds should be administered via the jejunal port of the tube
• Medications can be given via the jejunal or gastric port
• The tube should always be flushed with the recommended amount of cooled boiled water before and after feeds and before and after medications

Gastric Decompression:

Although your child/young person is not receiving feed into their stomach anymore the stomach produces juices that can build up in the stomach and cause the child/young person to retch and or vomit. A drainage bag will be attached onto the gastric port of their PEG-J or GJ tube to allow for drainage of these juices. The drainage bag is usually only required when the child/young person is receiving a feed, but some are more comfortable with the drainage bag on all the time

Percutaneous Endoscopic Gastro-Jejunostomy (PEG-J) tube?

This is a gastrostomy tube that sits in the stomach with an internal tube called an ‘intestinal tube’. The intestinal tube goes through the middle of the gastrostomy into the stomach and out of the stomach into an area of the small bowel called the jejunum. The end of the PEG-J tube has 2 ports one marked “I” through which feed and medication will be administered and the other marked “G” which will be used for gastric decompression. The gastrostomy and intestinal tube will be inserted under general anaesthetic using an endoscope.

The life span of the PEG-J tube depends on several factors: types of medications/feeds used, the acidity of the gastric fluid and tube care. The intestinal tube may require to be changed before the PEG tube.

Daily Care of the PEG-J tube

• Always wash and dry hands thoroughly before handling the tube.
• It is important that the stoma site is cleaned and dried once a day. For the first 3-4 days post PEG tube placement, sterile water or saline and gauze should be used to clean the stoma site.
• Following discharge to home, clean the stoma site with a clean cloth and unscented soap and water.
• Inspect the stoma site for signs of redness, swelling, irritation, skin breakdown and leakage. If you notice any of these signs, inform the medical team.
• Ensure the PEG-J tube stays away from the nappy/pad area.
• Do not rotate the PEG-J tube.
• It takes 2-3 weeks for the stoma to form a tract, it is important during this time not to submerge the whole area in water ~ have showers not baths. Swimming is not recommended for 6 weeks.

4-6 WEEKS AFTER THE PLACEMENT OF THE PEG TUBE

• Every week the white triangle fixator should be taken apart and the PEG tube gently pushed into the stomach by 4cm, and then pull the PEG tube back until you feel resistance. Close the white triangle fixator.
• Do not rotate the PEG-J tube.
• Do not position the fixation cover too tight as it can be uncomfortable and may damage the skin

 Administering Feeds

• Feeds can be administered via the intestinal port on a PEG-J tube.
• A draining bag can be attached to the gastric port of the PEG-J tube when the feed commences.
• If the child/young person starts vomiting milk feed or you see milk in the gastric drainage bag feeds, please stop feeds and contact the medical team for advice: this may be a sign of tube migration or misplacement.
• Tube migration or misplacement should also be considered if the child or young person: is showing signs of aspiration has abdominal distension and/or has worsening diarrhoea.

Gastrojejunostomy (GJ) tube

This is a silicone feeding tube that is placed through an established gastrostomy tract, it combines a gastric and jejunal feeding tube. The tube is held in place in the stomach by an internal inflatable balloon. The decision on non-low profile or low profile will be made with you depending on your child/young person’s needs. The initial tube is placed under general anaesthetic using an endoscope. Subsequent tube changes are usually carried out in X-ray with your child/young person awake.

The life span of the GJ tube depends on several factors: types of medication/feeds used, volume of water used to inflate the balloon, the acidity of the gastric fluid and tube care.

Daily Care of the GJ Tube   

• Always wash and dry hands thoroughly before handling the GJ tube.
• It is important that the stoma site is cleaned and dried at least once per day. This includes taking a bath or shower daily.
• Inspect the stoma for signs of redness, swelling, irritation, skin breakdown and leakage. If you notice any of these signs, inform the medical team.
• Clean the balloon port with cooled boiled water and cotton tipped applicator. This will help the port to function properly.
• DO NOT ROTATE THE GJ TUBE
• The water in the balloon of a GJ tube should be changed weekly (see training guidelines)

Administering Feeds

• Feeds can be administered via the jejunal port on a GJ tube.
• A drainage bag can be attached to the gastric port of the GJ tube when the feed commences.
• If the child/young person starts vomiting milk feed or you see milk in the gastric drainage bag feeds, please stop feeds and contact the medical team for advice: this may be a sign of tube migration or misplacement.
• Tube migration or misplacement should also be considered if the child or young person: is showing signs of aspiration has abdominal distension and/or has worsening diarrhoea.

Tube Blockages:

• Attempt to flush the tube with warm water using a pumping action. DO NOT USE EXCESSIVE PRESSURE WHEN FLUSHING. Leave the water for 30minutes. If this method fails, contact RHCYP for further advice.
• Do not try to administer fruit or fizzy drinks down the tube to dry and unblock it.
• If there is an extension set being used and this were to block, this can be replaced with a new extension set.

Other Information:

• If the tube comes out or becomes damaged, contact RHCYP for advice.
• For care of the Balloon - see Balloon Gastrostomy advice sections 8 and 8.9
• For stoma infection and overgranulation see sections 3 and 8.4
• More information can also be found in RHCYP teaching guidelines (see Appendix 6)

Low Profile Roux-en Y Jejunostomy Tube (surgically placed)

A surgical roux-en Y jejunostomy is created via a mini-laparotomy and forms a secure means of feeding a child jejunally.

An initial REY jejunostomy tube is placed, then following the formation of the roux-en Y, this is then changed by a surgeon under general anaesthetic in theatre (around 12-18months following formation: where this is changed to a low profile jejunostomy tube

If you have had difficulty inserting the low- profile jejunostomy tube or are concerned about the position of the low- profile jejunostomy tube the child/young person should be referred to A&E where tube position should be confirmed by contrast injection under X-ray screening.

The child/young person should be observed for any signs of pain or distress with feeding. If this occurs or if feeds do not run in freely the child/young person should be referred to A&E where tube position should be confirmed by contrast injection under X-ray screening.

For more information on care for Low profile roux-en y jejunostomy tube, please see RHCYP teaching guidelines.

Position During Feeding

• Where possible the child or young person should be positioned with their head above the level of their stomach, preferably sitting or supported at an angle of approximately 45 degrees
• If the child is unable to maintain this position, they should be well propped up on pillows at a minimum angle of 30 degrees
• If the child or young person shows any signs of shortness of breath (more than usual), sudden pallor, vomiting or coughing stop the feed immediately and seek medical attention.

Gravity Bolus feeding: this only applies to naso or orogastric and gastrostomy tube feeding (NOT JEJUNAL FEEDING)

• Follow principles of good hand hygiene before, during and after the procedure
• Prepare feed and equipment in a clean area (if feed is refrigerated allow to return to room temperature i.e. up to 30mins)
• Check the feed i.e. ensure correct feed, expiry date, undamaged and follow manufacturer’s guidance if preparing.
• Explain to the child or young person that they are going to have their feed
• If giving feed via a nasogastric tube always check the position of the tube (see flow chart, page 11)
• Ensure the child or young person is positioned correctly for feeding
• Flush the feeding tube with recommended amount of water
• Attach syringe without the plunger to the feeding tube
• Slowly pour the amount of feed required into the syringe
• If the feed is running too quickly or slowly, alter the height of the syringe slightly.
• When the feed is finished, flush the feeding tube with the recommended amount of water
• Remove the syringe and replace the end cap.

 See Infection and Control and Hygiene Practices for further advice

Pump feeding: this applies to Nasogastric, Gastrostomy and Jejunostomy Tube Feeding

• Follow principles of good hand hygiene before, during and after the procedure
• Prepare feed and equipment in a clean area (if feed is refrigerated allow to return to room temperature i.e. up to 30mins)
• Check the feed i.e. ensure correct feed, expiry date, undamaged and follow manufacturer’s guidance if preparing.
• Ensure the pump is positioned according to manufacturer’s guidelines
• Explain to the child or young person that they are going to have their feed
• If giving feed via a nasogastric tube always check the position of the tube (see flow chart, page 11)
• Ensure the child or young person is positioned correctly for feeding
• Flush the feeding tube with recommended amount of water
• Set up the feed, ensuring that air is expelled from the giving set and set the feeding pump according to the manufacturer’s instructions either for a continuous ongoing feed or set the time/volume limit for continuous bolus feed
• When the feed is completed, flush the feeding tube with the recommended amount of water.

 See Infection and Control and Hygiene Practices for further advice

Blended diet

• The term blended diet can apply to anything other than water or commercially prepared formula/feed being given via an enteral feeding tube.
• Blended diets are relatively new and therefore research in this area is currently limited. The BDA Use of Blended diet with Enteral Feeding Practice toolkit (2021) recommends a shared decision making approach to care, in line with current NICE guidance. The shared decision should be clearly documented in the individuals’ record by the dietitian and the MDT.
• Children > 1-year-old can have blended diet either as a sole source of nutrition or in combination with commercially prepared formula.
• Blended diet is only able to be administered via a gastrostomy tube (14 Fr).
• Blended diet cannot be administered via nasogastric tube due to the risk of blockage in view of the thin gauge of the tube.
• Blended diet cannot be administered via a jejunal tube due to the increased risk of potential infection through bypassing the stomach. Also the distal position of the tube may affect the absorption of nutrients.
• The dietitian should work with the child or young person’s family or carers to ensure the nutritional adequacy of the blended diet.
• Good food safety and food hygiene is key to avoiding any food borne infections and families / carers should be educated in this to minimise risks of infection for the individual.
• Blended diets may be able to be gravity fed for thinner consistencies however thicker consistencies may need to be slowly plunged. Blended diets cannot be administered during a feeding pump.
• Blended diets are not routinely provided for inpatients therefore parents/ carers should be made aware that they may return to sterile feeds during the admission.

Hand Hygiene

• Before or after providing enteral tube care, feed or medication administration, the 5 moments of hand hygiene should be completed.
• Employees suffering from infected wounds, skin infections, sore throats, diarrhoea / vomiting must be excluded from enteral tube feeding and advice sought from infection control (in the first instance) or occupational health.
• Non-sterile, non-powdered gloves and an apron should be worn.
• If a patient is managing their own enteral feeding tube then it is not necessary for them to wear gloves but hand hygiene must be carried out.
• Family/informal carers in the home situation are not required to wear protective clothing but should be aware that careful hand hygiene is important and cuts/sores on hands/forearms must be covered with a waterproof dressing, Carers should not handle enteral feeds if they have skin infections, diarrhoea or vomiting. In such situations medical advice should be sought.
• Minimal handling and aseptic technique should be used to connect the administration system to the enteral feeding tube.

Giving Sets, Syringes and Extension Sets

• Items marked ‘single use’ should not be reused
• Items marked ‘single patient use’ can be reused in a specific patient if the manufacturers cleaning instructions are followed: these may last up to 14 days. Refer to manufacturers cleaning guidance.
• Giving sets can be used for 24h when using a sterile system. Once disconnected from the feed they should be left attached to the used feed bag with the end cap on until reconnected to the next feed bag.
• If feed is not sterile (i.e. reconstituted feeds or mixed feed) giving sets and containers should not be used for more than 4 hours.
• Extension sets for PEG or button tubes should be changed fortnightly. For patients with longer inpatient stays these may be required to be brought in from home.

The Use of Water in Enteral Feeding

            Flushing Tube/Water Bolus

• In the hospital setting, sterile water should be used. Bottles of sterile water are single patient use and should be changed every 24 hours.
• In the community, freshly drawn tap water can be used if a patient is over 12 months of age and is fed into their stomach i.e. NG or gastrostomy fed.
• In the community, patients under 12 months of age, cooled boiled water should be used.
• In the community, patients with an NJ tube or jejunostomy tube, cooled boiled water should be used.
• If a patient has a private water supply, cooled boiled water should be used.
• If a community patient is immunocompromised, cooled boiled water should be used.
• Schools should use freshly drawn tap water if it is safe to drink, otherwise cooled boiled water should be used.

Changing water in balloons

• Cooled boiled water should be used to replace the water in balloon-retained devices. Parents/carers should have a jug identified for this purpose. The jug should be washed between uses with hot soapy water and allowed to air dry.
• If more than the required volume of water is prepared it should be stored in a clean container with a lid and refrigerated. It should be allowed to return to room temperature before being used.
• Cooled boiled water should be discarded after 24 hours.

Decanting Feed

• If feed is required to be decanted the required volume should be decanted into a feed container.
• Once decanted the feed should not be hung for more than 4 hours before being discarded.
• If any feed is left in the original bottle this can be stored refrigerated for up to 24h (but should be brought to room temperature before being administered down an enteral feeding tube)
• At home, decanted feeds have a longer hanging time than in hospital.

Pump Cleaning

• The pump should be cleaned before and after every episode of use.
• Consult manufacturer's instructions regarding how to do this.

• discuss with a pharmacist the medication requirements for any child or young person who will have to receive medication via enteral feeding tube
• the prescription should state the route by which the medication is to be administered
• the absorption of some medicines can be adversely affected by the presence of enteral feeds. Consider drug-drug and drug-nutrient interactions
• use liquid medications wherever possible. If the medication doesn’t come in this form an alternative should be found
• if medication is only available in tablet form, check this can be crushed as the efficacy of some formulations can be impaired or lost by crushing
• flush tube with the recommended amount of water before administering medications, between each medication and after all medications have been given. Some medications may require a larger water flush post administration
• there are some medications that are advised not be given via enteral tubes due to the likelihood of blockage such as Clarithromycin
• please seek advice from pharmacy regarding the administrating of medication via enteral feeding tubes

• ensure that the patient/carer has been advised on the importance of oral hygiene and regular dental checks
• explain to the patient/carer the importance of keeping the mouth, teeth and gums clean and free from infection
• the frequency and methods of oral hygiene and care will depend on the advice given by the Speech and Language Therapist, GP or Dentist as the patients mouth care needs must be assessed on an individual basis

If at any time, there are concerns regarding the child or young person oral hygiene such as a sore mouth, bleeding gums or blistering inside the oral cavity, seek medical advice.

• prior to discharge careful consideration should be given to ensure patients can be discharged home safely on enteral tube feeding. This includes identifying who will be responsible for daily care of the tube and administration of the feed
• the multidisciplinary team should be informed of the patient’s planned discharge. See Appendix 4
• a multidisciplinary discharge planning meeting may be required including the appropriate community staff. Once a discharge date and destination for the child or young person on enteral feeding is known, this should be communicated to the dietitian and community children's nurse
• relevant training must be provided for patients, parent/carers and care staff. The dietitian will co-ordinate with the relevant enteral feeding nurse (as per contract) who requires training and what training is required. Ward 15 staff will also support with training prior to discharge and sign off competencies
• the dietitian will advise what discharge supplies of enteral feed and equipment is needed. For patients being transferred out of area the dietitian will communicate with the dietetic team in the area they are transferring to
• all children and young people on discharged on an enteral feed will have a Community Children’s Nurse and a named Paediatric Dietitian. If required, a Speech and Language Therapist may also be involved.
• a written feeding regime should be provided for home
• if relevant a NHS Borders Individual Health Care Plan for enteral tube feeding should be shared with education. See Appendix 5
• it is essential that all patients and carers are fully aware and have written information regarding the procedure to follow if the feeding tube is displaced.
• teaching Guidelines can be found in Appendix 6

Children and young people receiving enteral nutrition will have ongoing monitoring and support from the paediatric dietitians and the community children’s nursing team. This will include 1:1 appointments and joint appointments.

Most children and young people who are enterally tube fed will be reviewed every 6-12 months at the Complex Feeding Clinic (CFC) where they are reviewed by a Community Children’s Nurse, Paediatric Dietitian +/- Speech and Language Therapist.

A small number of children and young people who are enterally tube fed will have dietetic input form a tertiary centre i.e. RHCYP.

Monitoring of growth parameters and nutritional requirements of children and young people on home enteral nutrition is based primarily on individual patient need.

The key goal with any aspect of enteral tube feeding should be, wherever possible, to improve quality of life by working feed regimens and cares around normal social activities to compliment lifestyle.

Growth Parameters

Infants less than 2 years

• Naked weight (no clothes or nappy), length and head circumference should be measured and accurately plotted on a standardised centile chart, and corrected age for prematurity should always be used for infants born at less than 37 weeks gestation until 2 years.
• As a minimum standard, growth parameters should be obtained and considered at 1-2 weeks post tube placement and then every 6 months as above.      

2 years – adolescence

• Weight and height should be measured and accurately plotted on a standardised centile chart 1 month post tube placement and then every 6 months.
• Anthropometry such as mid upper arm circumference (MUAC) and triceps skin fold thickness (TSF) may be a valuable tool to monitor specific patients where more detailed information is required.

More information on measuring and plotting can be found on the link below.

https://www.rcpch.ac.uk/sites/default/files/Measuring_and_plotting_advice.pdf

Clinical Monitoring

The following points should be discussed and considered at all reviews:

• Nutritional assessment: consider enteral feeding regime and any oral intake (including any texture modification)
• Fluid intake (from enteral feeds, flushes, oral intake)
• Nutritional requirements adjusted for weight/age/stress factors/physical activity
• Medical history: chronic disease, general condition
• Presentation: Appearance, energy levels, skin, hair, nails, oral hygiene etc.
• Gastrointestinal function: vomiting, reflux, bowel frequency/consistency, abdominal pain/distention
• Medications: including review of drug / nutrient interactions
• Enteral tube: tube care, site management, enteral feeding provider deliveries

Biochemical Monitoring

Any child receiving at least 50% of their daily nutritional requirements as enteral tube feeds should have blood collected for the following biochemical tests as a baseline:

• Urea and electrolytes, creatinine, glucose, liver function tests
• Calcium/Phosphate/Magnesium
• Albumin/Protein
• C-reactive protein, full blood count
• Zinc, copper, selenium (2ml LiHep in tube with push-on cap)
• Vitamins A/D/E (2ml LiHep)
• PTH (1ml EDTA)
• Vitamin B12/folate (1ml plain)
• Ferritin (0.5ml LiHep)

It is recommended that the above bloods are repeated at 6 months after the baseline blood tests and then annually thereafter.  The request for the nutritional blood test should be made by the Consultant Paediatrician.

If biochemical imbalances, deficiencies or excessive levels of individual nutrients are identified, then closer intervals for reassessment may be appropriate.

Urinary sodium and creatinine will often be a useful measurement in infants with stomas, short bowel syndrome, gastroschisis and cystic fibrosis. The frequency should be based on individual patient need.

Transition will be planned for children and young people on home enteral feeding tubes as part of a multi-disciplinary team. Information regarding the young person’s care plan will be shared appropriately.

Medical Team:

The medical team will arrange transfer to appropriate services.

Nursing Care:

Care by the Community Children’s Nurses will be transferred to the District Nurse Team if appropriate. The specialist enteral nurse will be informed that the young person has transferred to adult services. The specialist enteral nurse will provide support with tube care including changing the gastrostomy tube etc and other training needs such as feeding pumps.

Dietitian Care:

The paediatric dietitian will arrange for the young person’s dietetic care to be transferred to the community dietitian (adult) team. There electronic orders will remain in place.

Guideline for the management of infants, children and adolescents at risk of refeeding syndrome at RHCYP’

Guideline for the management of infants, children and adolescents at risk of refeeding syndrome at RHCYP’

Individual Health Care Plan

These teaching guidelines are a general guide to be used in conjunction with an explanation and a practical session(s) with a qualified healthcare professional.  

The following teaching guidelines are used below with the permission of NHS Lothian:

RHCYP Teaching Guidelines on Skin Level Gastrostomy Tubes (Button) (2022)

RHCYP Teaching Guidelines on Care and Use of a Percutaneous Endoscopic Gastrostomy (PEG) Tube (2022)

RHCYP Teaching Guidelines on Passing and Caring for a Nasogastric and Orogastric tube (2022)

RHCYP Teaching Guidelines on Administration of Nasogastric and Orogastric Feeds (2022)

RHCYP Teaching Guidelines on Administration of Nasojejunal Feeds (2022)

RHCYP Teaching Guidelines on Changing a Low-Profile Roux-ENY Jejunostomy Tube (2022)

RHCYP Teaching Guidelines on care and use of PEG-J or Gastrojejunostomy (GJ) Tube (2023)

Please contact RHCYP for access to these guides.

Nutricia Checklist for NGT Training

Additional local information for Nutricia NGT training. In addition to Nutricia training polices.

•  Position (30-45 degree minimum, see below)

During feeding:

• Where possible the child or young person should be positioned with their head above the level of their stomach, preferably sitting or supported at an angle of approximately 45 degrees
  
  
• If the child is unable to maintain this position, they should be well propped up on pillows at a minimum angle of 30 degrees
  
  
• Ensure safe position of external tubing to avoid strangulation.
  
  
• Ensure safe measures are discussed to support safe sleeping.
  
  
• Patient specific guidance if NGT tube becomes displaced
  
  
• Lead by team, patient specific.
  
  
• Local guidance on type of water and flushes.