Gastrostomy/Jejunostomy/Trans-Gastric Jejunal feeding at home€¦ · 3. Attach bolus adaptor to...

Gastrostomy/ Jejunostomy/Trans-Gastric

Jejunal feeding at home

Women’s & Children’s Hospital

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WCH – Gastrostomy Jejunostomy Trans-Gastric Jejunal feeding at home

Contents

What is tube feeding all about? 2

What equipment will I need? 4

Bolus feeding 7

Continuous feeds delivered via a pump 9

Cleaning the equipment 12

Giving medications 13

Caring for my child’s gastrostomy / jejunostomy / T-J tube 14

Trouble shooting 15

Inserting a low profile tube 18

Points to remember 18

Who can I contact for help? 19

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What is tube feeding all about?When children are unable to eat or drink enough to grow and develop normally, their intake needs to be adjusted to meet their nutritional needs. One way to do this is to feed baby formula or a special formula through a tube.

This tube is placed in a surgically created hole (called a stoma) through the abdominal wall, which is performed under general anaesthetic. This method of feeding may be temporary or permanent.

There are two main types of stoma for tube feeding:

> Gastrostomy – directly placed into the stomach

> Jejunostomy – directly placed into the small bowel

Either a short skin level tube (low profile tube) or a long feeding tube will be used. The low profile tube sits flush with the skin and has an anti-reflux valve to prevent the leakage of gastric contents. It is held in place by:

Balloon low profile tube

i. A balloon in the stomach or small bowel inflated with water.

Fixed bolster low profile tube

ii. A soft plastic retention flange.

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The long feeding tube has a flat disc on the abdomen to prevent it from moving in and is held in place by:

If a long feeding tube is inserted initially it will be changed to a short skin level tube after approximately 2 months.

Balloon long feeding tube with ENFit Transition adaptor

A balloon in the stomach or small bowel inflated with water.

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Trans-gastric Jejunal Tube (T-J Tube) – a low profile tube that is placed through a gastric stoma. This tube has access to both the stomach and the first part of the small bowel.

Gastrostomy feeds can be given either as a specific volume of formula at intervals (bolus feeding), slowly dripped into the stomach using a feeding pump (continuous feeding) or a combination of these methods.

Jejunostomy / Jejunal Tube feeding must be continuous.

Your child’s dietitian and doctor will discuss with you the type of formula and the amount of feed required to meet your child’s individual nutrition and hydration needs. This will depend on your child’s condition, how much they can take by mouth and their weight status.

This booklet gives you information on feeding procedures, equipment and who to contact if you have problems when you are at home.

What equipment will I need?All of your initial equipment will be ordered by the Home Enteral Nutrition nurse (HENS) and will be available for pick up from the Home Equipment Centre before discharge.

> ENFit syringes to flush the tube, give medications and to deliver a bolus feed if required.

Trans-gastric Jejunal Tube (T-J Tube)

ENFit syringes

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> Feeding pump, lines, flask and stand (if required).

> Extension line (if required).

> Bolus adaptor (if required).

Feeding pump

Flask

Extension line (if required)

Bolus adaptor (if required)

Line

Stand

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Ongoing SuppliesAvailable monthly and orders need to be placed by the parent/carer (see below).

Home Equipment Centre (HEC)The HEC supplies syringes, extension lines, tapered connectors and dressings. Please call the Home Equipment Centre to place your order each month, a minimum of 2 days notice is required.

The HEC is located in Paediatric Outpatients, Zone A Floor 1. It is open Monday to Friday from 9am to 12.30pm and from 1pm to 4pm. Phone: 8161 6233

Nutricia at home programThis program supplies feeding pump consumables (lines and flasks). Separate information will be provided explaining how to place your monthly order.

CostThe cost of these consumables will not exceed $50 per month and may be less depending on your child’s requirements. You will need to pay this amount on collection of consumables.

If you ask for items that are not on your referral a HENS nurse will need to approve the items as appropriate and safe for your child’s needs prior to an order being placed with the Home Equipment Centre.

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Bolus feeds (Gastrostomy only)When giving your child a gastrostomy bolus feed, it is important to follow the

following steps:

To start the feed:1. Wash your hands thoroughly.

2. Gather all the equipment required including ready to hang feed or prepare formula as per recipe.

3. Attach bolus adaptor to the ready to hang feed pack and unscrew the cap to pour.

4. Place your child in a semi-upright position (or in a position recommended for your child) for feeding.

5. Remove the plunger from the ENFit syringe.

6. > Low profile tube: connect the barrel of the syringe to the extension line and run some formula through the line to expel the air, and then connect the extension line to the low profile tube. IMPORTANT: Turn extension line ¾ turn only.

> Long feeding tube: connect the barrel of the syringe to the tube.

Ready to hang feed with bolus adaptor attached

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7. Pour the formula into the syringe and slowly run the feed through the tube. The speed of the flow is adjusted by changing the height of the syringe. If your child appears uncomfortable or unsettled the feeds may need to be slowed down by lowering the syringe.

8. Do not force the feed through the tube with the syringe plunger. Let the feed run through naturally to avoid the feed being given too fast. If given too fast this may cause vomiting or stomach pain.

9. An average length of time for a feed is 20 minutes. Feeding durations may vary depending on your child’s circumstances.

10. Refill the syringe as often as necessary to ensure that the required volume of feed is given.

11. Once the feed is finished, flush the tube with 3–5mls of cooled boiled water or an amount prescribed by your child’s dietitian. This can be done by adding water to the syringe when the feed is finished and allowing the water to flow in, or by disconnecting the syringe and flushing water into the tube. This is to prevent blockage of the tube.

12. Low profile tube: disconnect the extension line.

13. Ensure the gastrostomy connection is closed.

14. Clean equipment thoroughly (see Cleaning the equipment page 12).

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Continuous feeds via a pump

To start the feed:1. Wash your hands thoroughly.

2. Gather the equipment required including ready to hang feed or prepare formula as per recipe.

3. Set up the pump (see pump booklet ‘instructions for use’). Use a new pump line every 24 hours.

4. Prime the pump line with formula before connecting it to your child’s gastrostomy /jejunostomy / T-J tube. If your child has a low profile tube, connect the extension line to the pump line. Ensure the line and extension line are primed (filled with formula). Connect the primed line to the feeding tube. IMPORTANT: If you are connecting an extension line to the low profile tube, turn extension tube ¾ turn only.

Ready to hang feed

Pump on stand with flask

Pump on stand with ready to hang feed

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5. Start the pump and deliver the feed at the prescribed rate.

6. If the feed is stopped for any length of time during feeding, flush the tube with 3–10mls of cool boiled water. This is to prevent blocking of the tube.

7. When flushing a jejunostomy / T-J tube use a 20-30ml syringe at a rate not exceeding 2–3mls per minute (flush very slowly). Maximum flush volume 10mls.

8. If feeds are running continuously during the day, flush the feeding tube every 8 hours to prevent build-up of milk solids in tube and possible blocking.

9. The length of time formula can hang varies depending on the type of formula used. (See Hang Time on page 11).

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To stop the feed: 1. Wash your hands thoroughly.

2. At the end of the feed disconnect the line.

3. Flush the gastrostomy / jejunostomy / T-J tube with 3–10mls of cool boiled water or the amount prescribed by your child’s dietitian. This is to prevent blocking of the tube.

4. When flushing a jejunostomy / T-J tube use a 20-30ml syringe at a rate not exceeding 2–3mls per minute (flush very slowly). Maximum flush volume 10mls.

5. Ensure the gastrostomy / T-J tube / jejunostomy is closed.

6. IMPORTANT: A new pump line must be used every 24 hours. If giving a formula feed intermittently via the pump, the lines can be washed between feeds and discarded after 24 hours.

7. Clean the equipment thoroughly (see Cleaning the equipment page 12).

Hang time

To decrease the risk of bacterial contamination:

– A bottle of powdered formula should hang for no longer than 4 hours. – Pre-packaged feeds connected to feeding lines can be left hanging for

24 hours. – Remember to put the cap back on the feeding line between feeds if

giving bolus feeds over the day. – Pre-packaged feeds that have been decanted into a container can hang

for 12 hours. Throw out any formula taken out of the pack (that has not been refrigerated) after 12 hours.

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Cleaning the equipment > Syringes, extension lines and flasks can be washed and reused at home. Wash in warm soapy water, rinse and shake dry. Replace when worn.

> If you prefer to sterilise equipment use a steam steriliser or chemical sterilisation (e.g. the sterilisation fluid used for baby bottles).

> Store equipment in a clean, dry container with a lid.

> Ensure the feeding pump is cleaned daily by wiping over with a damp soapy cloth.

A new line must be used every 24 hours. If giving a formula feed intermittently via the pump, the lines can be washed between feeds and discarded after 24 hours.

To clean the line: 1. Use the ‘fill set’ button to empty the milk from the line.

2. Fill the flask with hot (not boiling) water and use the ‘fill set’ button to flush the line.

3. Use the ‘fill set’ button to flush the line a second time.

4. Press ‘fill set’ button again to empty water from the line.

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Giving medications > Most medications can be given via the gastrostomy/jejunostomy.

> Use liquid medications where possible.

> Some tablets can be crushed and mixed with water. Some medications may not be able to be given this way as they may block the tube or it may alter the way they work. Always check first with your child’s doctor or pharmacist before giving any tablets this way.

> The tube must be flushed with water after giving each medication.

> Where there is a jejunal and a gastric port, liquid medications are usually given down the gastric port.

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Caring for my child’s gastrostomy / jejunostomy / T-J tube > The stoma is usually flat, dry and painless.

> Do not bath your child for the first week after insertion (or low bath only).

> Clean around the tube and suture locks (if present) and under the skin disk (if present) as required using cotton buds. Dry area thoroughly. Do not rotate the suture locks.

> For the first week after insertion clean with sterile (or cool boiled) water.

> After the first week clean with warm tap water and a soft cloth, gauze or cotton buds in the bath or shower. Mild soap can be used to remove crusting. Rinse and dry well and leave exposed. The stoma site can be dried using a hair drier.

> Check for signs of redness, pain, swelling or leakage – if any of these are present see trouble shooting guidelines or contact the HENS nurse.

> Rotate the gastrostomy or jejunostomy tube once per day (after the first week). IMPORTANT: T-J tubes must not be rotated.

If suture locks are present, the sutures will remain effective for 2 weeks, after which the suture locks may detach freely from the abdomen or may be cut if recommended by the HENS nurse or surgeon.

> If your child has a balloon low-profile tube you will need to check the balloon monthly. The balloon port is at the side of the tube.

– Hold the tube in place and withdraw the water from the balloon using a 5ml syringe. Usually the balloon will contain 5mls of sterile water. (The amount may be more or less under certain circumstances).

– Observe the amount and colour of the water. If the water is clear, return it into the balloon. If it is cloudy or discoloured, discard the water and replace it with sterile or cooled boiled water.

– If there is less than the recommended amount of water in the balloon, top it up to the correct amount.

– If the tube appears to be loose or protruding from the abdomen further than usual, or there is leakage, it may indicate the balloon is losing water. Check the balloon.

– If it is continually losing water, rapidly loses a significant amount of water or the water is discoloured, the tube may need replacing. Contact the HENS nurse.

> IMPORTANT: Never feed or give medication into the balloon port.

Abdomen with suture locks

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Trouble shooting

Granulation tissueGranulation tissue is a soft red tissue which may build up around the stoma site. It may be tender, bleed easily and cause an increased amount of discharge. If the tissue becomes excessive and interferes with care, contact the HENS nurse.

Discharge / leakage from the stoma Discharge: Initially some clear fluid may ooze from around the stoma and dry to brown crust. This is normal and part of the healing process. If the discharge becomes yellow/green in colour, smells or the site is tender contact the HENS nurse.

Leakage: The stoma should be snug around the tube. If leakage occurs it is important to protect the skin around the stoma as it can become irritated by gastric contents. Protective or soothing creams, lotions or pastes may be recommended. These can be purchased at your local pharmacy.

It is also important to address the cause of the leakage e.g. the balloon is not fully inflated, constipation occurs or the volume of feed too large. Leakage may also increase if your child is unwell and usually stops when your child recovers.

If leakage continues, consult a HENS nurse for further advice.

If there is leakage through the tube the valve may not be working and you will need to call HENS to arrange for a change of tube.

InfectionRedness, pain and discharge from the stoma may indicate infection. If this occurs contact the HENS nurse or your doctor.

Vomiting

If your child vomits, stop the feed by kinking off the tube (for bolus feeds) or putting the pump on hold (for continuous feeds). When your child has settled, restart the feed, you may need to give it at a slower rate. If vomiting continues, contact your child’s doctor if you suspect they are unwell, or your child’s dietitian if you think it is related to the formula or feeding plan.

Granulation tissue

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Venting

This may be required to release excess air from the stomach.

Low profile tube – Attach the extension line to the tube and attach the barrel of a syringe and allow air to escape.

Long feeding tube – Attach the barrel of a syringe to the end of the tube and allow air to escape.

Constipation or diarrhoeaChanges in bowel habit can sometimes occur when the sole source of nutrition is from a liquid formula. This can be either constipation or diarrhoea. If this occurs and persists, contact your child’s doctor if you suspect they are unwell, or your child’s dietitian if you think it is related to the formula or feeding plan.

Accidental removal of the tubeSome children may pull at the tube. To prevent accidental removal, a secure dressing may be needed (e.g. an elastic net bandage). Dress babies or toddlers in a ‘onesie’.

If the tube is accidentally removed and it is held in place by a balloon:

i. if the stoma is less than 2 months old do not try to replace the tube. Cover the area with a clean cloth or dressing. Do not feed your child.

ii. if the stoma is more than 2 months old place the tube back into the stoma if possible and secure with tape, cover the area with a clean cloth or dressing. Do not feed your child.

Elastic net bandage

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If the tube is accidentally removed and is held in place by a retention flange, do not try to replace the tube. Cover the area with a clean cloth or dressing. Do not feed your child.

Notify the HENS nurse (if during normal office hours) or the hospital immediately and take your child to the Emergency Department. The tube should be replaced before the opening closes over (usually within a few hours).

Tube becomes shorter or longer than usual

The length of the tube should remain the same. If the tube is moving in either direction (in or out), problems with feeding may occur. Contact the HENS nurse, the Paediatric Emergency Department if after hours, or your arranged local support.

Blockage

Low profile tube

Flush with warm water using a 20-30ml syringe attached to the extension tube. Flush using pump action. If the low profile tube is still blocked contact the HENS nurse, the Paediatric Emergency Department if after hours, or your arranged local support. IMPORTANT: Never use force when trying to unblock a tube.

Long feeding Tube

If the water or formula will not flow through the gastrostomy tube check that the tube is not kinked. Residue from formula or medication may need to be flushed from the tubing with warm water using a 20-30ml syringe. Rolling the tube between your fingers may also help. If the tube is still blocked, contact the HENS nurse, the Paediatric Emergency Department if after hours, or your arranged local support. IMPORTANT: Never use force when trying to unblock a tube.

T-J Tube

Contact the HENS nurse, the Paediatric Emergency Department if after hours, or your arranged local support.

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Inserting a low profile tubeBalloon tubes are replaced when worn. The most common reason for tube replacement is balloon deterioration. Tubes are not replaced routinely; however they generally last at least six months.

Some parents wish to learn to replace their child’s balloon low profile tube. Others may prefer that the low profile tube be replaced by the HENS nurse. If you wish to learn how to replace a balloon low profile tube you will need to be taught how to do this by a HENS nurse. Instructions for replacement of the balloon tube can be found in the parent education guide which is provided with your child’s device.

Points to remember1. Always wash your hands thoroughly before starting any procedure or

preparing feeds. Hand washing is the single most important procedure for preventing the spread of infection.

2. Because your child’s weight and height are the best indicators of whether they are receiving adequate nutrition, it is important your child’s growth is reviewed regularly in the Tube Feeding (HENS) clinic or by your doctor.

3. There will be several health professionals involved with your child’s tube feeding phase. They will work together to consider the effectiveness of tube feeding in providing for your child’s nutrition and growth, will focus their expertise on your child’s development, and support you as a parent.

4. While your child may not be feeding orally, there is still a need for dental care. Plaque and calculus (hardened plaque) continue to develop daily on the surface of your child’s teeth, and in the absence of hard foods can form a thick visible layer. Daily cleaning with a soft toothbrush or flannel is the only way to minimise this and will help keep gums healthy.

5. If your child no longer requires the pump please call 1800 884 367 to arrange return. It will need to be packed in its box and Nutricia will arrange for collection. The stand needs to be returned to the Home Equipment Centre or HENS.

6. Please notify HENS if your child no longer requires their tube.

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Who can I contact for help?Women’s and Children’s Hospital switchboard 8161 7000

Home Enteral Nutrition Nurse 8161 7182 (If urgent contact through switchboard) 8161 7000

Dietitian 8161 7233

Home Equipment Centre (consumables only) 8161 6233

The Home Enteral Nutrition Nurse (HENS) can be contacted Monday to Friday, 8.30am to 4.30pm.

> For non-urgent matters please call the office number and leave a message if necessary.

> For urgent matters contact the hospital switchboard and have the HENS nurse paged.

> If you wish to see a HENS nurse please call to make an appointment.

> For urgent matters after hours contact the Paediatric Emergency Department or your arranged local support. If this occurs please inform the HEN service.

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Notes

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For more information Home Enteral Nutrition Service Women’s and Children’s Hospital Gastroenterology Department Zone B, Floor 8 72 King William Road North Adelaide SA 5006 Phone 8161 7182 or 8161 7000 pager 4125 Fax 8161 6088 www.wch.sa.gov.au

If you do not speak English, request an interpreter from SA Health and the department will make every effort to provide you with an interpreter in your language.

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© Department for Health and Ageing, Government of South Australia. All rights reserved. April 2018. (Digital Media 6288)

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Gastrostomy/Jejunostomy/Trans-Gastric Jejunal feeding at home€¦ · 3. Attach bolus adaptor to...

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