HOME CARE GUIDE FOR FAMILIES OF CHILDREN WITH A GASTROSTOMY
- Emil Mammadov
- 4 days ago
- 11 min read
Dear Parents and Caregivers,
Having a gastrostomy placed for your child may feel worrying at first. You may have many questions about how to care for the tube, how to feed your child, how to give medications, or what to do if a problem occurs.
Learning gastrostomy care takes time and practice. After a while, these care procedures usually become a natural part of everyday life.
This guide has been prepared to help you understand your child’s gastrostomy, provide safe daily care, recognize common problems, and know when to contact the healthcare team.
Important: Every child’s gastrostomy type, nutritional needs, and medical condition are different. This guide provides general information. The individual recommendations given by your child’s doctor, nurse, dietitian, and healthcare team should always take priority.
1. WHAT IS A GASTROSTOMY?
A gastrostomy is an opening created through the abdominal wall directly into the stomach. A tube or button is placed through this opening so that food, fluids, and, when necessary, medications can be given directly into the stomach.
A gastrostomy tube may also be used, when appropriate, to release excess air from the stomach.
Having a gastrostomy does not always mean that a child cannot eat or drink by mouth. Some children can continue oral feeding while using a gastrostomy if swallowing has been assessed as safe.
2. WHY DOES MY CHILD NEED A GASTROSTOMY?
Children may need a gastrostomy for many different reasons.
A gastrostomy may be recommended for children who:
cannot take enough food by mouth,
cannot meet their energy and nutritional needs for adequate growth and development,
have swallowing difficulties,
are at risk of aspiration while eating or drinking,
have neurological or muscular conditions that make feeding difficult,
require long-term tube feeding,
have certain congenital or surgical conditions.
The main purpose of a gastrostomy is to support safe and adequate nutrition, hydration, growth, and development.
3. GETTING TO KNOW GASTROSTOMY TUBES
The gastrostomy device used by your child may look different from the device used by another child.
PEG Tube
PEG stands for Percutaneous Endoscopic Gastrostomy. It is a tube placed into the stomach through the abdominal wall using an endoscopic procedure.
Balloon Gastrostomy Tube
A small balloon filled with water is located inside the stomach. The balloon helps keep the tube in place.
Gastrostomy Button
A gastrostomy button is a low-profile device that lies close to the skin.
A special extension set is connected to the button during feeding or medication administration and can usually be removed afterward.
Because it sits close to the skin, a gastrostomy button may interfere less with the child’s everyday movement and activities.
4. WHAT SHOULD THE GASTROSTOMY SITE LOOK LIKE?
A healthy, healed gastrostomy site usually:
has normal skin color or may be slightly pink,
has no significant swelling,
has no foul-smelling or pus-like discharge,
does not cause increasing pain or tenderness.
A newly placed gastrostomy may initially have mild tenderness or a small amount of discharge. However, any changes in appearance should be monitored carefully.
5. DAILY GASTROSTOMY SITE CARE
Keeping the gastrostomy site clean and dry helps protect the surrounding skin.
Before Care
Wash your hands thoroughly with soap and water.
Prepare the materials you will need.
Explain the procedure to your child in an age-appropriate way.
Look carefully at the gastrostomy site.
Cleaning the Site
Clean the gastrostomy site as often as recommended by your healthcare team.
In general:
Wash your hands.
Gently clean the skin around the tube with warm water and an appropriate cleanser if recommended.
Do not forcibly remove crusts. Allow them to soften with warm water.
Rinse the area if necessary.
Gently dry the skin with a clean cloth or gauze.
Remember
A clean and dry gastrostomy site helps reduce skin problems.
Do not apply creams, powders, ointments, or antiseptic products around the gastrostomy unless recommended by your healthcare team.
6. WHAT SHOULD I CHECK EVERY DAY?
During daily care, ask yourself:
Does the tube appear to be in its usual position?
Is there new redness?
Is there swelling?
Is there any discharge?
Is there an unpleasant smell?
Is there bleeding?
Is stomach fluid or feed leaking around the tube?
Does my child have more pain than usual when the area is touched?
Is there red, raised tissue around the gastrostomy?
Is there a crack or other damage to the tube or button?
Contact your healthcare team if you notice a new or worsening change.
7. SHOULD I ROTATE THE TUBE?
This depends on the type of gastrostomy and how long it has been in place.
Not every gastrostomy tube should be rotated.
Newly placed tubes, tubes secured with sutures, and gastrojejunostomy tubes may require different care.
Only rotate the tube if your healthcare team has specifically taught you to do so.
8. HOW DO I FEED MY CHILD THROUGH THE GASTROSTOMY?
Your child’s healthcare team should determine:
the type of formula or food,
the daily amount,
the number of feeds,
the feeding rate,
the amount of additional water required.
Do not use another child’s feeding plan for your own child.
Before Feeding
Wash your hands.
Prepare the feeding equipment.
Check the correct feed and amount.
Inspect the gastrostomy tube and connections.
Position your child appropriately.
9. WHAT POSITION SHOULD MY CHILD BE IN DURING FEEDING?
Your child’s head and upper body should be elevated during feeding.
Whenever possible, keep your child sitting upright or in a semi-upright position. For younger children, approximately a 30–45 degree elevated position may be appropriate.
Do not feed your child while lying completely flat.
After feeding, keep the child’s head and upper body elevated for the period recommended by your healthcare team.
10. BOLUS FEEDING
Bolus feeding means giving a prescribed amount of feed over a defined period and may resemble a regular meal.
General steps include:
Wash your hands.
Position your child appropriately.
If needed, connect the extension set to the gastrostomy button.
Flush the tube with the recommended amount of water if instructed.
Administer the prescribed feed using the recommended syringe or feeding system.
Do not give the feed too quickly.
When feeding is complete, flush the tube with the recommended amount of water.
Close the tube.
Remove the extension set if appropriate.
Do not force feed rapidly into the stomach by pushing hard on the syringe plunger.
11. PUMP FEEDING
Some children require feeds to be given slowly over a longer period using a feeding pump.
Your healthcare team should teach you how to:
prepare the pump,
insert the feeding set,
set the feeding rate,
program the required volume.
Do not change the feeding rate or prescribed amount without advice from your doctor or dietitian.
12. WHAT IF MY CHILD BECOMES UNCOMFORTABLE DURING FEEDING?
Stop the feed and assess your child if they develop:
gagging,
vomiting,
significant abdominal swelling,
abdominal pain,
coughing,
difficulty breathing,
significant distress or unusual restlessness.
Seek emergency medical care if your child develops breathing difficulty, bluish discoloration, or altered consciousness.
If feeding intolerance happens repeatedly, contact your healthcare team.
13. WHY SHOULD THE TUBE BE FLUSHED WITH WATER?
Flushing helps reduce the amount of feed or medication left inside the tube and helps prevent blockages.
The tube may need to be flushed:
before and/or after feeding,
before medications,
between different medications,
after medications.
Use the amount of water recommended for your child.
The amount of water is not the same for every child.
Children with fluid restrictions require an individualized plan.
14. HOW DO I GIVE MEDICATION THROUGH THE GASTROSTOMY?
Before giving a medication through the gastrostomy, ask your doctor or pharmacist whether the medication is suitable for tube administration.
General Principles
Do not mix medication into the feed unless specifically advised.
Do not mix several medications together in one syringe.
Give medications separately.
Flush the tube with the recommended amount of water between medications.
Flush again after all medications have been given.
Very Important
Not all tablets can be crushed and not all capsules can be opened.
Some extended-release, controlled-release, or specially coated medications may become unsafe or ineffective if crushed.
Always ask your doctor or pharmacist before crushing a medication if you are unsure.
15. DO NOT FORGET ORAL AND DENTAL CARE
Even if your child does not eat by mouth, oral and dental care remains important.
According to your child’s age:
brush the teeth regularly,
keep the mouth clean,
prevent the lips from becoming excessively dry,
continue regular dental check-ups.
Oral health remains important even in children who receive all nutrition through a gastrostomy.
16. CAN MY CHILD EAT BY MOUTH WHILE USING A GASTROSTOMY?
Some children can continue eating and drinking by mouth while using a gastrostomy. In others, oral feeding may need to be limited because of swallowing or aspiration risks.
This decision should be made by the child’s doctor and feeding/swallowing team.
Having a gastrostomy does not automatically mean that a child can never eat by mouth.
17. RELEASING AIR FROM THE STOMACH
Some children may develop excess gas or air in the stomach.
This may cause:
abdominal bloating,
discomfort,
gagging,
difficulty tolerating feeds.
If needed, your healthcare team can teach you how to vent the gastrostomy safely.
Only perform this procedure in the way you have been taught.
18. CAN MY CHILD HAVE A BATH?
There may be temporary restrictions on bathing immediately after gastrostomy placement.
Once the wound has healed and your healthcare team gives permission, children can generally bathe normally.
Always ask the surgical team when bathing can safely begin after a new gastrostomy.
Dry the gastrostomy site gently after bathing.
19. CAN MY CHILD SWIM?
After the gastrostomy site has completely healed and the healthcare team has approved it, many children can swim.
Swimming is generally not recommended with a newly placed gastrostomy.
Before swimming in a pool, sea, or other body of water, make sure the site is fully healed and that your child has no specific medical restrictions.
20. CLOTHING AND DAILY LIFE
Most children with a gastrostomy can continue age-appropriate everyday activities.
Make sure clothing:
does not pull on the tube,
does not put excessive pressure on the gastrostomy,
does not catch on the tubing or connectors.
For younger children, clothing that helps prevent accidental pulling of the tube may be useful.
21. CAN MY CHILD GO TO SCHOOL OR DAYCARE?
Yes. Children with a gastrostomy may attend school or daycare if their general health allows.
People responsible for the child should know:
the type of gastrostomy,
the feeding plan,
what to do in an emergency,
what to do if the tube comes out,
who to contact.
A written gastrostomy care and emergency plan is useful for school or daycare.
22. REDNESS AROUND THE GASTROSTOMY
Mild redness may sometimes be caused by friction or contact between stomach contents and the skin.
You should:
keep the site clean,
dry it carefully,
check whether the tube is pulling on the skin,
check for leakage.
Contact your healthcare team if redness is spreading, the area becomes hot or swollen, pain increases, there is foul-smelling or pus-like discharge, or your child develops fever.
23. WHAT IS GRANULATION TISSUE?
Red or pink, moist, raised tissue that may bleed easily can sometimes develop around the gastrostomy.
This is called granulation or hypergranulation tissue.
It does not always mean that there is an infection. It may be associated with moisture, friction, or movement of the tube.
Do not cut, burn, or treat it yourself.
If treatment is needed, the appropriate method should be determined by a healthcare professional.
24. WHAT IF THERE IS LEAKAGE AROUND THE GASTROSTOMY?
A small amount of stomach fluid may occasionally leak around the tube.
Ongoing leakage can irritate the skin.
Clean the area.
Dry it thoroughly.
Check that the tube is not being pulled.
Check whether it appears too tight or too loose.
Contact your healthcare team if leakage continues.
Do not change the tube or button size on your own in an attempt to stop leakage.
25. WHAT SHOULD I DO IF THE TUBE BECOMES BLOCKED?
First, remain calm.
Check that the tube is not kinked and that any clamp is open.
Using the method taught by your healthcare team, you may gently try to flush the tube with an appropriate amount of warm water.
Do not use excessive pressure.
Unless specifically advised by your healthcare team, do not use:
sharp objects,
wires,
needles,
carbonated drinks,
unapproved liquids or chemicals
to unblock the tube.
If the tube remains blocked, contact your healthcare team.
26. WHAT SHOULD I DO IF THE TUBE COMES OUT?
WARNING – URGENT SITUATION
If a gastrostomy tube comes out completely, it requires prompt assessment.
The gastrostomy opening can begin to narrow or close within a short period of time.
Stop feeding.
Note the time when the tube came out.
Cover the area with clean gauze.
Follow the emergency plan previously provided by your healthcare team, if you have one.
Contact your gastrostomy/surgical team immediately or seek appropriate emergency medical care.
Especially With a Newly Placed Gastrostomy
A new gastrostomy tract may not yet be fully formed. Incorrect reinsertion may result in the tube entering the abdominal cavity instead of the stomach and can cause serious complications.
Do not attempt to reinsert the tube yourself unless you have specifically been trained and instructed to do so.
27. WHAT IF THE TUBE LOOKS PARTIALLY DISLODGED?
If the length of the tube outside the body has changed or the button appears more prominent than usual:
stop using the tube,
do not force it back inside,
do not give food, fluid, or medication through it,
contact your healthcare team.
28. IF MY CHILD HAS A BALLOON GASTROSTOMY TUBE
Balloon gastrostomy tubes contain a specific amount of water in the internal balloon.
The following vary depending on the device:
how often the balloon should be checked,
what type of water should be used,
how many milliliters should be in the balloon.
Follow the instructions given by your healthcare team.
Do not add extra water to the balloon unless instructed.
29. WHAT IF MY CHILD VOMITS?
If your child vomits during feeding:
Stop the feed.
Elevate the child’s head and upper body.
Observe their breathing.
Allow the child to settle.
Seek medical advice if vomiting is recurrent or associated with inability to tolerate feeds, significant abdominal swelling, severe pain, green vomit, or deterioration in the child’s general condition.
30. WHAT IF MY CHILD HAS DIARRHEA OR CONSTIPATION?
Diarrhea or constipation may be related to:
the type of feed,
fluid intake,
medications,
infections,
changes in feeding rate.
Do not change your child’s feeding plan without professional advice.
Contact your doctor or dietitian if diarrhea or constipation persists.
31. WHEN SHOULD I CONTACT THE HEALTHCARE TEAM?
Contact your healthcare team if you notice:
increasing redness,
swelling or pain,
foul-smelling or pus-like discharge,
repeated bleeding,
significant leakage,
increasing granulation tissue,
repeated tube blockages,
damage to the tube or button,
increasing difficulty with feeding,
repeated vomiting,
poor tolerance of feeds,
a change in tube length or position,
suspected balloon problems.
32. WHICH SITUATIONS REQUIRE URGENT MEDICAL ATTENTION?
Seek urgent medical care if your child develops:
difficulty breathing,
bluish discoloration,
significant alteration in consciousness,
severe or increasing abdominal pain,
marked abdominal swelling with deterioration in general condition,
severe or persistent bleeding,
loss of a newly placed gastrostomy tube,
suspected incorrect tube position,
sudden severe pain or breathing problems after feeding,
rapid deterioration in general condition.
33. WHEN TRAVELLING
When leaving home for an extended period, take sufficient supplies with you.
Useful items may include:
syringes,
feeding sets,
extension sets,
formula or prescribed feeds,
cleaning supplies,
spare connectors,
medications,
emergency gastrostomy supplies recommended by your healthcare team,
information about your child’s gastrostomy,
contact details for the healthcare team.
Whenever possible, carry slightly more supplies than you expect to need.
34. FREQUENTLY ASKED QUESTIONS
Does a gastrostomy hurt?
A fully healed gastrostomy should not normally cause continuous pain. New or increasing pain should be assessed.
Can my child sleep on their stomach?
After healing, many children can sleep in comfortable positions. Ask your healthcare team about any individual restrictions.
Will the gastrostomy remain for life?
Not always. How long it is needed depends on the child’s condition and nutritional needs.
Can my child eat by mouth again?
Some children can. Oral feeding skills may continue to be supported while a gastrostomy is being used. The safety of oral feeding depends on the child’s swallowing function.
Will a gastrostomy prevent my child from living normally?
In most cases, after healing, children can participate in play, school, and many age-appropriate activities.
35. DAILY CARE CHECKLIST
I washed my hands.
I checked the gastrostomy site.
I checked for redness.
I checked for swelling.
I checked for discharge or unpleasant odor.
I checked for leakage.
I checked for granulation tissue.
I checked the tube/button.
I cleaned the site as instructed.
I dried the site thoroughly.
I gave feeds according to the prescribed plan.
I flushed the tube with the recommended amount of water.
I gave medications according to the plan.
I recorded any unusual findings.
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