Gastrostomy Tube Feeding and You - Information For Parents and Carers Royal Manchester Children's Hospital

Royal Manchester Children’s Hospital

Gastrostomy Tube
Feeding and You
Information For Parents and Carers

 Ward:

 Contact/Tel:

 Consultant:

Contents                                      Page

Introduction                                     3

Reasons for gastrostomy tube feeding             3

How are the tubes/buttons put in?                4

What will the tube/button look like?             4

Feeding via the tube                             5

How to care for the gastrostomy tube/button      6

Trouble shooting                                 7

Teaching plan                                    8

                               2

Introduction
This leaflet has been written to inform and teach children, young people,
parents and carers who are going to be involved with gastrostomy tube
feeding. After reading this leaflet there may be some points you wish to have
explained more clearly, or you may have some additional questions, please do
not hesitate to ask.
What is a gastrostomy? A gastrostomy is the hole (stoma) made from the
stomach out onto the abdomen.
What is a gastrostomy tube/button? A gastrostomy tube/button is the device
that is fitted into the stoma in order that feeds can be given.

Reasons for gastrostomy tube feeding
There are two reasons for a gastrostomy:
1. Your child has already needed to be fed using a naso-gastric tube
for quite a long time, and is likely to continue to need to be fed via
a tube for some time.
Removing the naso-gastric tube and replacing it with a gastrostomy is now
common practice. Naso-gastric tubes are uncomfortable and can be difficult
to manage. The management of naso-gastric tubes also creates a lot of
unpleasant activity around the child’s face and mouth area, all of this often
makes children less likely to eat and drink normally. Activity surrounding
feeding has become unpleasant rather than pleasurable, over time if their
medical condition will allow, your child will be more likely to eat through their
mouth without a naso-gastric tube.
Naso-gastric tubes can sometimes attract the unwanted attentions of the
general public, therefore the cosmetic effect achieved from a gastrostomy
tube may be more desirable.
2. Your child may have severe gastro-oesophageal reflux.
This is one of the more common reasons for using gastrostomies. Children who
have severe oesophageal reflux often need to have the top of their stomachs
tightened surgically (Fundoplication) to reduce vomiting. Gastrostomies are
usually formed during this operation.

                                           3

How are the tubes/buttons put in?
The initial gastrostomy tube/button is always inserted in theatre during a
surgical procedure necessary to form the gastrostomy.

What will the tube/button look like?
There are two main types of gastrostomy devices: Tubes and buttons
Gastrostomy tubes, these have a long piece of extension tube that is
permanently in position, again there are two main types in use.
1. A permanent Percutaneous Endoscope Gastrostomy (PEG) this is held in
   place using a rigid disc on the inside of the stomach and a flange on the
   outside (the skin) of the abdominal wall. Although these are described
   as being permanent they do require changing on a very infrequent basis
   (usually between 1-5 years). This type of PEG needs to be removed and
   replaced in theatre under a general anaesthetic.
2. A temporary gastrostomy tube is also available, the method of fixation
   inside the stomach is either a balloon or a soft disc, which can be deflated
   and reduced in size for removal. On the outside a similar flange is used
   as with the PEG.
Gastrostomy tubes are used because:-
   •   They are a simpler operation than button placement.
   •   They can be used as an initial placement until the stoma is properly
       formed prior to changing to a gastrostomy button.
Gastrostomy buttons lie flatter on the abdomen, extension tubing needs to
be attached in order to deliver a feed.
The majority of the gastrostomy buttons we use can be removed and replaced
easily, this means that it can be done without anaesthetic, at home if you wish,
by yourselves after training, or by community nursing staff. They do need
changing about every 3-6 months because the balloon holding it in position
may not work as well after this.

                                          4

Feeding via the tube
Wash your hands and ensure that you have a clean surface to work on.
1. Collect all of the equipment you are going to need.
2. Wash hands again.
3. Put the required amount of feed in the delivery bottle if a pump is being
   used, connect and prime (run the feed through) the tubing to expel all air.
4. Place the feeding set in the pump if appropriate.
5. Flush the gastrostomy tube/button using 5-I0mls of cooled boiled water
   to ensure that it is not blocked, close the button or clamp the tube.
6. If you are not using a feed pump attach the syringe to the feeding
   extension set (for a button) or directly onto the gastrostomy tube
   if appropriate.
7. Fill the syringe with the feed. Run through to the end of an extension set
   if in use to expel all air, clamp this set and then connect to the button.
8. Unclamp the gastrostomy tube or extension set and allow the feed to
   run in.
9. Tube feeds should be given over at least 15-20 minutes to prevent
   vomiting and abdominal discomfort. (Children would not normally
   take feeds any faster than this if they were feeding orally)
12. Babies may still experience problems with colic therefore winding may be
    of benefit.
11. Clamp tubing and disconnect feeding equipment.
10. Once the full feed has been delivered, flush through using 5-10mls of
    cooled boiled water to remove any remaining feed from the tube.
    This will help to prevent blockage and bacteria building up from feed
    left in the tubing.

To relieve wind
If your child appears to experience a lot of abdominal discomfort (colic)
after feeding and they find it difficult to get rid of wind, a 50ml catheter
tip syringe can be attached to the gastrostomy or extension tubing prior to
feeding, if this is held above the level of the stomach air may then be
released. Ask the nursing staff to demonstrate this for you.

                                          5

How to care for the gastrostomy
tube/button
There is usually a booklet detailing all care available with each tube used, if you
do not receive one ask the nursing staff.
The following are general guidelines, which should be used along with the
specific information from your manufacturer (found in the booklet).
Turning the tube/button: This needs to be done at least once per day for 2 to
3 weeks after insertion. Turn the tube in the stoma through 360 degrees, this
will prevent the tube from adhering to the stoma and promote healthy stoma
formation, in turn this will help to make tube changes easier.
Cleaning the tube: The skin underneath the flange/top of the tube needs to
be kept clean and dry in order to reduce infection.
Gently clean the skin around the stoma with warm soapy water at least twice
a day, using cotton tipped applicators or a soft cloth clean underneath the
flange/button top. Be sure to remove any dry crusted secretions and then rinse
the area thoroughly. Dry using a soft cloth.
Dressings: Gastrostomy tubes and buttons do not usually need dressings to
be applied around them; in fact the area is much less likely to become
troublesome if left uncovered. A correctly fitted tube should not cause skin
problems, so there should be no need for padding.
Any dressings used should be done under the supervision of your nursing team;
this will usually be done as part of your child’s treatment.
Checking the balloon volume: If your child has a balloon on their
gastrostomy button you will need to remove the water, check the volume
and replace the correct amount of water in it at least once weekly.
Water can slowly evaporate out of the balloon so you may find that there
is often a little less than you put in originally. The nursing staff will show you
how to do this; at home you can fill the balloon with cooled boiled water.
Swimming: Most Surgeons will allow you to swim about 6 weeks after the
initial surgery; this will have given the stoma chance to heal properly.
Giving medicines: Always flush the tube with a small amount of cool boiled
water in between each medicine to prevent any adverse reaction from taking
place. Try to avoid giving crushed tablets down the tube as these may block it
Always ask your Doctor or Pharmacist if there is a syrup alternative, if you do
have to give tablets crush them thoroughly and mix them with water, flush
well afterwards.

                                            6

Trouble shooting
Leakage from around the tube: First of all you need to be sure that there
is no infection around the site; pus can sometimes be produced leading us to
believe that it is actually stomach content that is leaking. (Check with your
Community Nurse, GP, or Surgical Consultant.)
If the tube has a balloon try putting an extra 1ml of water in it. (Refer to the
manufacturer’s handbook to ensure that you do not exceed the recommended
volume.) This may help to ‘plug’ the hole made in the stomach and therefore
reduce the opportunity for stomach contents to leak out.
If a feeding extension tubing is being pulled, tape the tubing to the skin to
minimise the pulling on the stoma. The tape should be changed at least once
a day.
Stomach contents leaking onto the skin can cause it to become very sore, a
good barrier cream may be of use.
If none of the above work contact to your Community Nurse or Surgical
Consultant who will check that the device is fitting correctly.
Leakage up through the tube: If stomach content or feed leaks up from
inside the tube it is likely that the valve has been damaged, the tube/button
will need to be changed.
Stiff or blocked tube/button: Refer to the manufacturer’s instructions or
contact your Community Nurse for advice. If this fails the tube will need to be
replaced, correct flushing before and after feeds should prevent any
blockage, prevention is better than cure.
The tube is sticking out more than usual or it is moving in and out a lot.
The balloon has probably burst, check the water volume in it. If you draw
fluid back easily it may be stomach contents, check using a piece of litmus
paper looking for an acid reaction. If the balloon is burst the tube will need
to be replaced.
If a tube with a flange is in use, ensure the flange is in the correct position.
That is, a 10 pence piece should fit flat between the tube flange and the skin
when your, child is in a sitting position.
The area around the tube is red and there is a ridge of wet flesh around
the site. This is called over-granulation. Over-granulation occurs as part of
the body’s natural response to the presence of a foreign object, unfortunately
it provides a perfect place for bacteria to grow. Contact your Community
Nurse, GP, or Surgical Consultant to assess and prescribe approriate treatment.
Balloons constantly rupturing prematurely, this may be due to a fungal
infection/colonisation within your child’s stomach. Contact your Community
Nurses to take an aspirate from the gastrostomy.

                                           7

Patient Name:

Learner’s Name:

Date Teaching Began:

 Action            Date      Date        Date        Assessor’s
                   Shown     Practised   Competent   Signature
 Hand washing
 Area for feed
 preparation
 Checking the
 tube position
 Releasing
 ‘wind’
 Setting up
 the feed
 Priming lines
 Clamping
 the tube
 Connecting
 the feed
 Giving the
 feed (setting
 pump or
 bolus feeding
 Ending the
 feed (Including
 final flush)
 Cleaning and
 storage of the
 equipment
 Turning the
 tube/button
 Cleaning the
 stoma site
 Moving flange
 for cleaning
 purposes
 Checking the
 water in a
 gastrostomy
 balloon

Date Teaching Completed (Carers Copy):

                                    8

Patient Name:

Learner’s Name:

Date Teaching Began:

 Action            Date      Date           Date        Assessor’s
                   Shown     Practised      Competent   Signature
 Hand washing
 Area for feed
 preparation
 Checking the
 tube position
 Releasing
 ‘wind’
 Setting up
 the feed
 Priming lines
 Clamping
 the tube
 Connecting
 the feed
 Giving the
 feed (setting
 pump or
 bolus feeding
 Ending the
 feed (Including
 final flush)
 Cleaning and
 storage of the
 equipment
 Turning the
 tube/button
 Cleaning the
 stoma site
 Moving flange
 for cleaning
 purposes
 Checking the
 water in a
 gastrostomy
 balloon

Date Teaching Completed (Copy For Notes):

                                    9

No Smoking Policy
The NHS has a responsibility for the nation’s health.
Protect yourself, patients, visitors and staff by adhering to our no smoking policy.
Smoking is not permitted within any of our hospital buildings or grounds.
The Manchester Stop Smoking Service can be contacted on
Tel: (0161) 205 5998 (www.stopsmokingmanchester.co.uk).

Translation and Interpretation Service
Do you have difficulty speaking or understanding English?

                                   % 0161 276 6202/6342

                         Royal Manchester Children’s Hospital
                                               Oxford Road
                                               Manchester
                                                M13 9WL

                                          www.cmft.nhs.uk

                         © Copyright to Central Manchester University Hospitals NHS Foundation Trust

    TIG 134/10 DCH 39/09 Produced October 2004 Updated March 2010 Review Date March 2012 (SF Taylor CM2039)