Gastrostomy
Tube Feeding
Information for Children, Parents and Carers
Contents
Introduction3
What is a Gastrostomy Tube?
3
Why does my child need a feeding tube?
3
How is a gastrostomy tube inserted?
4
The Operation – What happens before the operation?
4
What happens after the operation?
5
How do I feed my child?
5
How should I position my child when giving a feed?
6
Where do I get the feed, supplies and equipment from?
7
What do I feed my child through the feeding tube?
8
How do I store the feed?
8
How do I give medications through the tube?
9
How do I look after the tube?
10
Looking after the site
10
Frequently asked questions
12
What are the possible complications?
16
Contact list
18
2
Introduction
Our booklet explains gastrostomy feeding tubes and how to care
for your child’s tube at home. It is also designed to answer some
questions you might have about tube feeding. We also explain what
to expect when your child comes into Children’s University Hospital,
Temple Street to get their feeding tube inserted.
What is a Gastrostomy Tube?
A gastrostomy tube is a feeding tube that is placed directly into the
stomach. Your child will be given special liquid food through the tube
directly into the stomach by passing the mouth and throat.
A feeding tube is used to give your child all or part of their
nutritional needs.
Why does my child need a feeding tube?
Feeding tubes are inserted for different reasons.
These include:
• If a child has a problem with their mouth,
oesophagus (food pipe) or stomach
• If swallowing or sucking is impaired and there
is a risk of choking and aspirating (i.e. food enters not only the
oesophagus and stomach, but also the lungs)
• If
a child has difficulty managing to take enough food by mouth
to meet their nutritional needs
The Doctor will explain why your child needs a feeding tube.
3
How is a gastrostomy inserted?
A gastrostomy tube is inserted in theatre under general anaesthetic
when your child is asleep.
It can be done in two ways:
1 The gastrostomy tube can be inserted using an endoscope.
This is called a percutaneous endoscopic gastrostomy (PEG).
An endoscope is a long narrow tube with a camera and light
at the end of it. It is passed through the mouth and throat into
the stomach. The Doctor will use the endoscope to place the
feeding tube in the stomach and secure it in place.
2 It can also be placed surgically. The Doctor will make an
opening into the stomach and place the feeding tube through
the skin into the stomach. The stomach is then stitched
closed around the tube.
What happens
before the operation?
Your child’s doctor will meet with you to discuss
the surgery, explain the procedure and you will
sign a consent form for the surgery. Another
Doctor will visit to explain about the anaesthetic.
Blood samples may be taken to check that your
child is well before the operation. Your child’s
Consultant or Team will explain the estimated
length of stay and post-operative feeding regime
as this varies.
The Nurses and Play Specialist will talk to your child if appropriate to
make sure they understand and are prepared for the operation.
4
A training session will begin with you when your child is admitted.
You will receive training on how to care for your child’s feeding tube.
The Nurses will use a special form to help guide the teaching you
need. This is completed at the end of training to ensure you are happy
with all aspects of feeding and caring for a gastrostomy tube.
What happens after the operation?
Your child will be taken back to the ward when they have woken up
from the anaesthetic. They may feel a bit groggy and sleepy.
Your child may have a drip for one to two days after the operation.
The site of the gastrostomy tube may look a little red and ooze a
bit, but this will settle down a few days after the operation. Mild pain
killers will be given to control any pain.
When the Doctor is satisfied with your child’s progress, feeding will
start through the tube for the first time. This may start on the day the
peg is inserted or up to 3 days after. Your child will be discharged
home when they are established on feeds and tolerating them. This
usually takes 3-5 days but can be longer.
How do I feed my child?
Every child is different. The amount or type of feed your child receives
is specific for them and will depend on your child’s weight, height,
activity level, medical conditions and your home circumstances. The
Dietitian will discuss a feeding regime with you – see your child’s
personal feeding regimen on page 18.
5
There are 2 different methods of feeding your child using a
feeding tube:
Method of feeding
Explanation
Continuous
The feed is given slowly over a number of
hours using a special pump.
A specific amount of feed is given at one
time which may or may not require a
special pump
Bolus
A combination of both methods can also be used.
How should I position my child
when giving a feed?
Your child should be propped up during feeding.
This helps the food to move through the stomach
into the intestines. If lying in a bed, the head
of the bed should be tilted, or pillows may be
placed under the mattress. They should remain in
this position during the feed and for up to 30-60
minutes after tube feeding.
6
Where do I get the feed, supplies and
equipment from?
Item
Where do I get it from
Feeding tube
Tube feed
Giving sets
Syringe*
Two pack connector
(if needed)
Flocare container
(if needed)
Feed stand
Pump
Prescription
Pharmacy or Public Health Nurse
Pharmacy or Public Health Nurse
Pharmacy or Public Health Nurse
Pharmacy or Public Health Nurse
Pharmacy or Public Health Nurse
Pharmacy or Public Health Nurse
The feeding company
The feeding company
Hospital and/or GP
*Syringes are purple in colour
7
What do I feed my child
through the feeding tube?
There are many types of special formula that can
be given to your child through the gastrostomy.
Many formulas used are pre-prepared and ready
to use. Some feeds have to be made by mixing a
number of powders and liquids together. If this is
the case, the Dietitian will arrange for you to visit
the formula room where you will be shown how
to make the feeds and given a copy of the feed
recipe. You will then be supervised making the
feed to ensure you are confident to do it at home.
It is very important that only the feed advised by the
hospital is put down the tube; do not put anything
else down the tube.
How do I store the feed?
Ready made feeds in cartons, packs or bottles
can be stored in a dry cool place away from
sunlight, if they are unopened. Check the shelf life
on all products to make sure they are in date. Do
not use feed from any damaged cartons or bottles.
If you have to make special feeds you can do
so for the amount your child will require in one
day. They can then be divided into bottles of the amount they need
at each feed (the Dietitian will discuss this with you). Feeds are stored
immediately in the refrigerator in a covered jug or bottle, ready to use.
Any made-up feeds that are open in the fridge (cartons/bottles/special
made up feeds) should not be kept any longer than 24 hours.
8
Any feed that is left after this time should be discarded. The
refrigerator temperature should be 5°C or less. Do not use feeds
directly from the fridge; allow them to stand for 10 to 15 minutes at
room temperature.
How do I give medications
through the tube?
If you need to give medication down the tube, the medication
should be a liquid. Check availability of a medication in liquid form
or if tablets are crushable with your pharmacist. If a tablet is to
be crushed, be sure it is crushed finely and dissolved/dispersed
completely in warm water.
When giving medications through the tube, stop the feed and close
the clamp on the feeding set. Give the medication in a syringe
through the feeding tube or through the opening at the end of the
feeding set (a Nurse will demonstrate this to you before discharge).
Flush the tube, using a syringe, with a minimum of 10ml of sterile
water or cooled boiled water before and after giving each medication.
For some medications it may be necessary to stop the feed for a
period of time before and after the feed. You will be advised if this is
necessary.
NEVER mix medication with tube feeding formula.
NEVER mix medication together.
9
How do I look after the tube?
O
nce a day please turn the tube in a
complete circle.
Y End
Internal
Bumper
When the tube has been in place for four
weeks the external fixator device should be
opened and the inside cleaned. This must be
carried out weekly.
External
Fixator
Clamp
PEG Tube
A
removable Y connector is located at the
end of the tube. This may be changed if it breaks or becomes
clogged with feed. Please ensure you have a repeat prescription
for this before you go home.
Vary
the position of the clamp on the tube to avoid damage to
the tube. Replacement clamps are available from manufacturer
or hospital if required.
Looking after the site
Always wash your hands with liquid soap and
water before you touch the tube.
The area around the PEG or gastrostomy tube on
the outside of your stomach is called the “stoma
site”. It is very important that the stoma site is
kept clean and dry. Your Nurse will recommend cleaning solutions or
you may use cooled boiled water. Clean the skin around the stoma
site with gauze or soft cloth daily. Begin at the stoma site and work
outwards. When you have finished washing the stoma site, gently dry
the area thoroughly.
For a few days after insertion of the tube, there may be a discharge
(fluid leaking) from the stoma site. This is normal and will heal in one
to two weeks. Some sites may ooze for longer.
10
Check every day for the following:
edness at the stoma site: If you see redness which persists or
R
is painful inform your GP or Public Health Nurse.
ozing from the site: If you notice oozing from your child’s
O
gastrostomy site after it has been dry, tell your GP, who may send
a swab to a hospital laboratory. You may be advised to apply
an antibiotic cream. Do not apply an antibiotic to the site unless
advised to do so. Continue cleaning and dry thoroughly. You may
need to use a dressing to protect the skin and absorb the ooze.
vergrowth of skin around stoma: The skin may overgrow and
O
require treatment. This is known as granulation tissue. This is
the result of the body trying to repair the surgical incision. If this
occurs contact your GP.
Leakage of stomach contents from around the stoma site:
Leakage of gastric contents around the stoma site can cause
burning and pain of surrounding skin. The external fixation device
may need to be tightened so the internal bumper is against the
stomach wall. You will be shown how to tighten the fixator by a
Nurse caring for your child.
If there has been excessive leakage from the stoma site, contact your
GP. A special antacid barrier cream will be prescribed if necessary.
11
Frequently asked questions:
1 Who will teach me about the tube
and provide me with support?
A Nutritional feed company representative will visit
you in the hospital to teach you how to use the
pump and equipment needed for your child’s tube feed. A Nurse or
Dietitian who is also familiar with using the pump will give you additional
teaching sessions if necessary. You will be given many opportunities
to ask questions so that you are confident to use the pump and give
the feed at home. If you have questions when you go home you can
contact the feed company representative, Dietitian or Nurse.
A Nurse will teach you how to care for the stoma site and tube
at home.
You will be given a prescription for the feed your child requires.
Contact your GP for a repeat prescription and contact your pharmacy
at least 5 days before you run out of feed.
2
Will my child need the tube forever?
Some children need tube feeding for short periods of time, while
others may need them long term. Your child’s Doctor will discuss
the expected length of time your child will require a feeding tube.
Your child’s progress will be reviewed regularly by their Consultant
and Dietitian.
3
Can my child eat normal foods while being tube fed?
You will be informed if your child can eat while on tube feeds. If they
are allowed eat, you will be given information about what types of
food and amounts your child can eat. If your child needs to be tube
fed because of a swallowing difficulty, they will be visited by a Speech
12
and Language Therapist in hospital. If they are allowed to eat, the
Speech and Language Therapist will advise you on what types of
food are safest for your child.
4
What can I do if my child cannot eat?
Children who are tube fed and cannot eat can
become anxious about eating and other things
associated with their mouth such as teeth
cleaning. It is important to promote pleasurable
experiences or sensations around the mouth.
The Speech and Language Therapist will give you
advice and recommend activities to do with
your child.
These may include:
•
Encourage your child to put objects such as teething rings or
soothers in their mouth
• Touching your child around his/her mouth
•
Playing mouth games such as blowing kisses & raspberry
sounds
• Messy play with non-food or food items
• Introducing food smells
•
Offering food tastes – your child’s medical team will let you
know if your child is allowed to taste food. If your child is
allowed to do this, allow them to taste at the same time your
child 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
13
5
Do I need to look after my
child’s teeth?
YES. It is really important that you look after your
child’s teeth as normal. They must be brushed
twice daily.
6
Will my child be able to go to school?
Children on tube feeds usually continue to go
to school as normal. You will need to inform
the school that your child has a tube and if they
need feeds during school hours. The school may
need some basic information regarding the tube. If your child will be
receiving feeds and/or medications through the feeding tube during
the school day, the School Nurse or Carer may supervise. Training
may need to be arranged. This can be discussed with your child’s
Dietitian or Nurse.
Can my child play sport, go swimming, and take a
7
shower or bath with the tube?
Yes. After the tube is first inserted your child
will be advised to avoid swimming and having
baths for 4 weeks and to have showers
instead. After this the site will be healed
fully and it will be possible for your child
to play sport, go swimming or take a bath
again. Before your child has a bath or goes
swimming you must always be sure that the
tube is closed before placing it in water.
Also ensure that the site is dried thoroughly
after being in water.
14
8
Can we go on holiday?
There is no problem going away on holidays but it
does require some preparation. You must ensure
you have adequate supplies of feed, giving sets
and syringes. You will also need to bring your
pump and charger. It is advisable to bring medical
letters stating that your child is on a special feed
and needs to bring giving sets and syringes with them. This letter may
be obtained from the hospital or from your GP. It may help to contact
the airlines customer service department if travelling by plane and ask
what their policy is regarding travelling with tube feeds and feeding
pumps. Also contact your feed company as early as possible (ideally
a minimum of 6 weeks) before your travel as they may be able to help
with getting your feeding supplies to your holiday destination.
9
What do I do if I need more help?
Discuss any problems or questions you
have with nursing staff, Doctors or Dietitian.
They will involve other healthcare
professionals if necessary.
15
What are the
possible complications?
Blockage
Always flush the feeding tube before starting a
feed and after the feed has finished. Flush before
and after any medication is given. Use 10ml syringes or bigger to
flush the tube as smaller syringes put pressure on the tube.
If the tube is blocked try the following:
1
F lush with sterile/cooled boiled water using a 50ml syringe. Try
to gently insert the water and draw back. Repeat this a few
times. (Be sure to change the syringe if you get anything back).
2 Wrap a warm facecloth/towel around the peg and leave for
5-10 minutes and then repeat as above.
3 If you cannot unblock the tube contact Temple Street or
your local hospital for advice.
Never use force to clear a blocked tube.
16
Tube Dislodged
If the Gastrostomy tube is accidentally dislodged, do not insert
anything into the stoma. Place a dry dressing over the stoma. Return
to your local Emergency Department or the Children’s University
hospital, Temple Street as soon as possible.
(A stoma can close over within 2-4 hours)
Illness
Vomiting and/or diarrhoea
• Always set the pump at the correct rate
• Make sure all the feeding equipment is kept clean
• Change the giving set at least every 24 hours
• Check that the feed is within its expiry date
• Cover and refrigerate any opened feed that is not used
•
Once opened, any unused feed should be discarded after
24 hours
If your child feels nauseated (feels sick), wait one to two hours before
feeding and then resume feeding at a slower rate. If they continue
to feel sick, start vomiting and/or diarrhoea persists you will need to
contact your GP for further advice
Some medications, for example antibiotics, can cause diarrhoea,
discuss this with your Doctor.
17
People you may need to inform when
your child is to be admitted for insertion of
a gastrostomy tube
1
Your child’s Paediatrician
2
Your Public Health Nurse
3
Your pharmacy/chemist
4
Your Community Dietitian
5
Your child’s school
Useful Contacts
Child’s Name: ________________________________________________
Ward: __________________________________ Tel: _________________
Dietitian: _______________________________ Tel: _________________
Feed Company: __________________________ Tel: _________________
Feed Name: _________________________________________________
Feed Regimen: _______________________________________________
___________________________________________________________
___________________________________________________________
GP: ____________________________________ Tel: _________________
Public Health Nurse: ______________________ Tel: _________________
18
Gastrostomy Insertion
Date
Tube type
Tube size
Inserted by
Comments
Weight History
Date
Weight
Date
19
Weight
Children’s University Hospital
Temple Street
Dublin 1
Tel: 01 878 4200
www.cuh.ie
Please remember to wash your hands or use
hand gel when visiting the Hospital
Authors:Miriam Kennedy, Clinical Education Facilitator
Eilish O’Connell, Clinical Education Facilitator
Helen Tuffy, Clinical Education Facilitator
Clodagh Dempsey, Dietitian
Michelle Doyle, Clinical Education Facilitator
Fiona Boyle, Dietitian
Imogen Carter, Senior Speech and
Language Therapist
Version: 2
Approval Date: May 2012
Review Date: May 2014
Copyright© Children’s University Hospital
Printing of this booklet is funded by
The information contained in this leaflet
is correct at time of development.