- For patients & carers
- For parents
Long Term Care and Support
With good care of your feeding tube you should be able to avoid most problems in the long term. This could include tube blockages and leaks or fluid around the tube.
It's important to carefully follow the advice given to you by your healthcare team. Avoid administering anything other than the tube feed and medications or water through the tube. Remember to change your giving sets at least every 24 hours.
Also, good hygiene practices are important and you must flush the tube before and after all feeds and medications. You should use at least 10ml of sterile or boiled cooled water to flush your tube, unless the dietitian has told you otherwise. You can refer to your tube feeding plan for more guidance.
Caring for your gastrostomy or jejunostomy tube
The area around the tube on the outside of the stomach is called the 'stoma site'. It is very important that you clean the stoma site every day after you leave hospital. After 2-3 weeks, when the site has healed, you can care for it by keeping to the simple instructions below:
- Wash your hands with soap and water
- Check the stoma site for any signs of:
- Leakage
- Swelling
- Irritation
- Redness
- Skin breakdown
- Soreness
- Movement of the tube in and out of the stomach/jejunum.
If you notice any of the above, tell someone on your healthcare team.
- Clean the skin around with saline solution or other disinfectant as the nurse at the hospital instructed you. Begin at the centre and work outwards
- When you have finished washing the stoma site, gently dry the area thoroughly
- PEG only: you should follow the guide given to you with regards to advancing and rotating your tube. This is important to keep the stoma site healthy
- Balloon retained gastrostomy only: you should follow the guide given to you for checking and replacing the water in the Balloon.
If you are worried about the stoma site or feeding tube, contact the clinical nurse specialist in the hospital that you were discharged from, or any other member of the healthcare team.
Caring for your nasogastric (NG) and nasojejunal (NJ) tube
- Keep the tube clean and dry
- Clean the skin around your nose with a damp cotton wool pad and warm soapy water
- Rinse and dry carefully
- If your nose looks irritated or if it's sore tell a member of your healthcare team.
To protect your skin place a dressing like DuoDERM® under the NG/NJ tube. Secure the tube with a clear film dressing, such as TegadermTM. Other similar dressings may be used based on your local area guidance. Putting the end of the tube behind the ear will keep it further out of the way.
You should check the position of the NG tube before every use. This is to make sure it is still in the stomach. Your dietitian or nurse would have shown you how to do this before leaving the hospital. If you have an NJ tube, you should check that the external length of the tube has not changed.
If you're unsure the tube is in the right position, it's important that you do not continue feeding. You should contact your doctor, nurse, dietitian or hospital immediately for further advice.
It's important to flush the tube before and after you give any feeds and medications. This will prevent the tube from being blocked.
Ongoing oral care
Good oral healthcare is still important to help keep breath fresh, teeth healthy, and prevent infections and tooth decay. You can apply cream or lip balm to your lips to prevent dry lips.
If you or the one you care for have dentures, they should be cleaned with a brush and stored in a denture pot filled with fresh water overnight. Your mouth will still need to be cleaned. You should use mouth gel to keep your mouth moist (if needed).
If you have any problems with a dry mouth, sore tongue, bleeding gums, or blistered mouth, you should seek advice from your doctor, dentist or speech and language therapist.
Glossary
Stoma site = an opening from the outside through the skin where the feeding tube enters into the stomach or the small intestine (jejunum).
Long Term Care and Support
With good care of your child's feeding tube you should be able to avoid most problems in the long term. This could include tube blockages and leaks or fluid around the tube.
It's important to carefully follow the advice given to you by your child's healthcare team. Avoid administering anything other than the tube feed and medications or water through the tube. Remember to change child's your giving sets at least every 24 hours.
Also, good hygiene practices are important and you must flush the tube before and after all feeds and medications. You should use at least 10ml of sterile or boiled cooled water to flush the tube, unless your child's dietitian has told you otherwise. You can refer to your tube feeding plan for more guidance.
Caring for your child's gastrostomy or jejunostomy tube
The area around the tube on the outside of the stomach is called the 'stoma site'. It is very important that you clean the stoma site every day after your child leaves hospital. After 2-3 weeks, when the site has healed, you can care for it by keeping to the simple instructions below:
- Wash your hands with soap and water
- Check the stoma site for any signs of:
- Leakage
- Swelling
- Irritation
- Redness
- Skin breakdown
- Soreness
- Movement of the tube in and out of the stomach/jejunum.
If you notice any of the above, tell someone on your child's healthcare team.
- Clean the skin around the stoma site with saline solution or other disinfectant as the nurse at the hospital instructed you. Begin at the centre of the stoma site and work outwards
- When you have finished washing the stoma site, gently dry the area thoroughly
- PEG only: you should follow the guide given to you with regards to advancing and rotating your child's tube. This is important to keep the stoma site healthy
- Balloon retained gastrostomy only: you should follow the guide given to you for checking and replacing the water in the Balloon.
If you are worried about the stoma site or feeding tube, contact the clinical nurse specialist in the hospital that your child was discharged from, or any other member of the healthcare team.
Ongoing oral care
Good oral healthcare is still important to help keep breath fresh, teeth healthy, and prevent infections and tooth decay. You can apply cream or lip balm to your child's lips to prevent dry lips.
If your child has any problems with a dry mouth, sore tongue, bleeding gums, or blistered mouth, you should seek advice from their doctor, dentist or speech and language therapist.
Promoting oral stimulation
Oral stimulation with eating and drinking is an important part of every child's developmental process. For children who are unable to eat and drink, it's important to promote pleasurable experiences or sensations around your child's mouth. This can also help prepare your child for the possibility of eating or drinking again one day.
A speech and language therapist will give you advice and recommend activities to do with your child. Some ideas include:
- Encourage your child to put objects, such as teething rings or soothers, in their mouth
- Touch your child around his or her mouth
- Play mouth games such as blowing kisses and raspberry sounds
- Encourage messy play with non-food or food items
- Introduce food smells
- Offer food tastes if your child's healthcare team says this is acceptable. If so, allow your child to taste at the same time he/she is being fed by the tube. This will help your child to associate the smell, taste and sight of food with the feeling of hunger being satisfied
- Include your child in the social occasion of family mealtimes.
Glossary
Stoma site = an opening from the outside through the skin where the feeding tube enters into the stomach or the small intestine (jejunum).
