Vesicostomy ‘button’ care in children – information for parents and carers

Introduction

There are several different types of urinary catheter which are inserted and used to empty the bladder of urine:

• Intermittent catheters which are inserted, the urine allowed to drain and then the catheter is immediately removed.
• Indwelling catheters which are left in place for a length of time (days, weeks, or months) and are held in place with a small balloon. Indwelling catheters may be passed into the bladder via the urethra (wee tube) or directly into the bladder via the abdominal (tummy) wall (“suprapubic”).

This leaflet provides information about ‘vesicostomy button’ devices (sometimes known as ‘cystostomy buttons) which are indwelling suprapubic devices.

What is a vesicostomy?

The term vesicostomy refers to the small opening (hole) made in the lower abdomen, just below the belly button (umbilicus) through which a tube is passed to allow urine to drain out of the bladder.

What is a ‘button’ device?

The full name for a button device is a 'low profile balloon retained tube' and is traditionally a term to describe a device which is manufactured to be placed in the stomach as a feeding tube. However, it has been recognised that the same device can be used for a different purpose that is, it can be placed into the bladder, through a vesicostomy, and used to drain urine out of the bladder. When used in this latter way it is referred to as a ‘button vesicostomy.’

Why has a vesicostomy button been suggested for my child?

A vesicostomy button is usually suggested when a child needs medium to long term drainage of their bladder and other types of catheter are not suitable.

The external base

The external base holds the tube in place but still allows air to circulate around the skin. The bottom of the base should rest just above the skin surface.

The silicone retention balloon

A small (usually 5ml capacity) balloon is inflated inside the bladder to hold the tube in place. The balloon is

filled with sterile (cooled, boiled) water which should be changed fortnightly.

The balloon valve

The balloon which holds the tube in place is inflated and deflated by inserting a luer tipped syringe into the balloon valve.

What are the benefits of a vesicostomy button?

• The ‘standard’ catheter used (called a suprapubic catheter) has a longer external tubing which is not removable and which needs to be secured with a dressing to prevent it ‘dangling’. The vesicostomy button is low profile when not being used.
• It ensures the bladder is adequately emptied when it is unable to do this on its own.
• Depending on the reason for your child having the vesicostomy button, it may be possible for them to continue to pass urine via their urethra (the wee tube).
• It is reversible. When it is no longer needed the vesicostomy button can be easily removed and the hole will usually close quickly.
• Whilst the vesicostomy button is in place your child can shower, swim, go to school and continue activities as normal.

What are the risks and potential complications of a vesicostomy button?

Most risks are the same as having a ‘standard’ suprapubic catheter including:

• Urinary tract infection (UTI). This can be more common than when an intermittent catheter is used and the UTI can be more difficult to treat.
• The device can become blocked and so require change.
• The device can displace (fall out or be inadvertently pulled out).
• Urine can leak out of the stoma (hole on the abdomen) which is called ‘bypassing’.
• The skin on the abdomen at the stoma site can become red and sore.
• Blood may be seen in the urine; this is called ‘haematuria’ – see section ‘Problems that can occur and action needed’.
• Bleeding can occur at the stoma site; this usually settles after a few days but may occur if the catheter has been accidentally pulled.
• Overgranulation may occur at the stoma site. See section ‘Problems that can occur and action needed’.

Other risks which are specific to having a vesicostomy button include:

• The button device is manufactured and licenced for use in the stomach. When medical equipment is used ‘off licence’ (differently from the intended use when manufactured) the manufacturers responsibilities are not the same and the care team advising of its use therefore need to have completed additional risk related assessments.

Are there alternatives to a vesicostomy button?

The alternative to a vesicostomy button is a ‘standard’ suprapubic catheter. We have a leaflet for parents/carers which provides information on suprapubic catheters. Please ask your care team if you would like one.

If your child has a catheter to help manage long term continence issues, then two alternative options may be available:

• Use of intermittent catheters - Intermittent catheters are passed via the urethra (wee tube) and into the bladder. Urine drains out of the bladder via the catheter and then the catheter is removed.
• In older children who need long term bladder management, surgical formation of a Mitrofanoff may be possible. A Mitrofanoff (pronounced ‘my-troff-an-off) procedure (also known as the ‘continent urinary diversion’) creates a channel from the skin on the abdominal (tummy) wall into the bladder. An intermittent catheter can be passed through this channel to drain urine out of the bladder. Please ask your nurse or doctor if you would like to have information on these alternative methods of bladder drainage.

How does the urine drain via a vesicostomy button?

Urine is drained from the bladder intermittently, but regularly, throughout the day, by connecting an adaptor and ‘extension set’ (see image below) to the button device. The extension set opens an internal valve and this allows urine to drain from the bladder. This process mimics the natural filling and emptying cycle within the bladder.

If your child needs continuous overnight drainage, a urine drainage bag can be attached to the extension set to permit continuous drainage.

What is an extension set and how is it used?

Before applying the extension set, ensure the clamp on the extension set is in the closed position. To connect the extension set, open the dust cover on the vesicostomy button. Identify the line on the extension set and line this up with the line on the vesicostomy button. With your fingers supporting either side of the vesicostomy button, gently push the extension set into the drainage valve and then lock in place by turning as directed by the arrow on the extension set.

With the end of the extension set held over the toilet/appropriate receptacle, open the clamp and urine will drain out.

Always remove the extension set when not in use to reduce the risk of accidental dislodgement of the vesicostomy button.

Care of the vesicostomy button

Cleaning

• Daily care of the vesicostomy site will reduce the possibility of soreness or infections. Older children should be encouraged to care for their sites themselves.
• Always ensure that you wash your hands before and after caring for your child’s vesicostomy button.
• The vesicostomy site should be cleaned daily with warm soapy water.
• During cleaning, check that the vesicostomy button is not becoming too tight or too loose. You should be able to lift the device 2mm from the skin. If you are concerned that it may be too tight/loose contact a member of your care team.
• Always avoid using cream or powders on the skin around the tube (unless otherwise advised by your care team). This can damage the tube material and may lead to irritation of the skin and give rise to infection.
• Vesicostomy sites can become infected. If you notice that the skin is becoming inflamed or there is discharge (‘oozing’) from the site you should contact a member of your care team.
• Dressings around the vesicostomy button are usually not required (unless advised in certain circumstances when specific dressings for use around the site will be provided).

Changing water in balloon

The purpose of changing the water is to ascertain the condition of the balloon. If the balloon is beginning to perish this will be indicated by either drawing back (‘aspirating’) less water than expected and/or the water which is aspirated being discoloured. If either of these things are observed you should arrange for the vesicostomy button to be changed within 24 hours. If these signs are ignored the balloon is at risk of bursting and the vesicostomy button may fall out.

• If the current vesicostomy button is the first type of suprapubic drainage system that your child has had, the water in the retaining balloon should not be changed until the vesicostomy button has been in place for four weeks (while the tract heals) but should then be changed every two weeks after that.

Procedure

To change the water in the retaining balloon:

1. Collect together the equipment required:
   1. Two clear (‘luer slip’) syringes
   2. Sterile (cooled boiled) water
2. Wash hands.
3. Draw up 5mls of the water into one of the syringes.
4. Hold the vesicostomy button still by placing a finger and thumb on either side.
5. Insert the empty syringe into the balloon valve (marked ‘BAL’) and remove all water from the balloon.
6. Check the aspirated water in the syringe for volume and colour.
7. Discard old water.
8. Take up new water, insert the syringe into the balloon valve and let go of the syringe. If the syringe has been inserted fully it will stay connected to the tube on release.
9. Gently push the syringe so that the water is injected into the device.
10. Once all the water has been injected, remove the syringe by using a slight twisting motion. It is important to keep your thumb on the end of the syringe whilst removing it to prevent water being unexpectedly pushed back into the syringe.

Resizing

As children grow they may need a longer or shorter vesicostomy button. You will know when a change of size is required as the vesicostomy button will appear too tight or too loose. (You should be able to lift the vesicostomy button 2mm from the skin). If you are concerned that it may be too tight or loose contact a member of your care team. They will be able to re-measure the vesicostomy tract and advise what length is required.

Cleaning and replacing extension sets

• We advise that the extension set is changed every 2 weeks.
• Between each use the extension set needs to be cleaned with hot, soapy water.
• Store dry with the clamp open.
• If your child is under the age of one year, is immunocompromised or you have been advised by your care team, the extension set will need to be sterilised after it has received its hot/soapy wash. Sterilise by placing in Milton solution for at least 30 minutes. Rinse with cooled boiled water. Store in a sterilised container.

Rotating the vesicostomy button

• To prevent complications when a change of a vesicostomy button is due, once per week, rotate the vesicostomy button 360 degrees by gently turning it.

Undertaking a change of your child’s vesicostomy button

A silicone vesicostomy button generally lasts for 3 to 6 months but its lifespan will vary with each individual child. The first change is likely to be undertaken by a specialist nurse or doctor at the hospital. Subsequent changes can be undertaken at home by a children’s community nurse. You can also be taught how to perform the changes with the support of a community nurse. Even if you are not keen on the idea of changing your child’s vesicostomy button yourself it is important to know how to do this in case of an emergency or being away on holiday etc.

Replacing a vesicostomy button as a planned event

1. Collect together the required equipment and check expiry dates on packaging

Equipment and rationale

• Clean, designated tray - To use as a clean work surface.
• Sterile gloves of an appropriate size - the vesicostomy button should be changed under sterile conditions wherever possible.
• Non-sterile gloves of an appropriate size - For removing the old vesicostomy button.
• Sterile dressing pack.
• Sterile dressing towel.
• Gauze - For cleaning.
• Water based lubricating gel - To act as a lubricant
• Sodium Chloride (‘Normasol sachets’ x2) - For cleaning.
• New vesicostomy button of appropriate gauge and length
• Empty syringe of sufficient size to deflate the balloon on the current vesicostomy button - To deflate the balloon on the ‘old’ button
• Syringe of sterile (cooled boiled) water (volume of water should be as per individual child’s care plan) - To inflate the balloon.

2. Drain the bladder using usual technique

To prevent urine flowing in large volumes whilst the planned change of vesicostomy button is taking place.

3. Perform the change

• Wash hands
• Check expiry dates on equipment and that packaging is intact
• Open the dressing pack onto the tray and open other equipment onto it as per sterile procedure taught
• Wash hands again then put on sterile gloves.
• Before inserting the new tube it is important to check that the parts all function:
  • Draw up 5mls of the water into one syringe.
  • Push the syringe into the balloon port (marked BAL).
  • Let go of the syringe and ensure that when you let go the syringe stays attached in the balloon port.
  • Push the water into the balloon and disconnect the syringe.
  • Examine the balloon for faults (for example, leaks) and ensure that the shaft is in the centre of the balloon. If the shaft is to one side, massage the balloon in your hand until it is centralised and therefore fully symmetrical (leakage may occur if the balloon is not symmetrical when inside the bladder).
  • Place the syringe back into the balloon port and deflate the balloon fully.
• Refill the syringe to 5mls with the water (a small amount of water will have been taken up by the T-shaped part of the device).
• Attach an empty syringe to the balloon valve (marked ‘BAL’) of your child’s vesicostomy button. Once the syringe is pushed fully in, water will begin to be expelled from the balloon out into the syringe. (Sometimes it might be necessary for you to gradually pull back on the plunger of the syringe but usually water will be expelled spontaneously).
• Once no more water can be removed disconnect the syringe from the balloon valve and discard it.
• Gently remove the vesicostomy button from your child’s bladder.
• *Without delay, wash hands and put on new sterile gloves (*if a second person is present and wearing sterile gloves then that person continues care at this point)
• Clean the stoma site with sodium chloride (‘saline’) using a single wipe with each piece of gauze in a clockwise direction (minimum of three wipes).
• Apply lubricant gel to the tip of the button.
• Gently push the button device into the tract until the top part sits flat against your child’s skin.
• Hold the vesicostomy button still by placing a finger and thumb on either side to support it.
• Insert the newly filled syringe into the balloon port, let go of the syringe and ensure it stays connected.
• Gently push the syringe so that the water is injected into the device.
• Once all of the water has been injected, remove the syringe by using a slight twisting motion. It is important to keep your thumb on the end of the syringe whilst removing it to prevent water being unexpectedly pushed back into the syringe.
• If there is resistance at this point or your child experiences pain, withdraw the water, tape the button in place and arrange emergency review at your nearest emergency department).
• Dry the stoma area.
• Perform hand hygiene and dispose of equipment.
• Telephone your community nurse to order a new vesicostomy button so that you have a spare again.
• Remove any dressings that are in place using plaster adhesive remover wipes as needed.

Complications resulting from planned changes of vesicostomy button are very rare. However, if any ‘red flag’ symptoms are seen you should contact the paediatric surgery nurse specialist team (contact number at the end of this leaflet). The nurse specialist team is available Mon-Fri 08:00 to 18:00 excluding bank holidays. Outside of these hours you should speak to your GP or local hospital who will contact the paediatric surgery specialist registrar at Addenbrooke's.

The ‘red flag symptoms’ are:

Common questions

Where do I get the equipment and supplies?

You will be given enough supplies for 14 days before being discharged. The process for obtaining ongoing supplies will need to be agreed by your child’s local community team before a vesicostomy button is inserted to ensure a seamless supply of equipment. You should remember to order new supplies in good time before you run out and only use equipment for the length of time specified by the manufacturer.

Can I/my child bath or shower?

Yes. You/your child can bath or shower as normal. Dry the area thoroughly afterwards.

Can I/my child go swimming?

Yes. Make sure the dust cover is in place.

Will I/my child be able to go to school?

You/your child should be able to go to school as normal. Staff at the school can be taught what to do if the vesicostomy button falls out and spare supplies should also be kept at the school for emergency use.

Can we go on holiday?

• It is fine to travel with your child but we advise that you discuss travel plans with your doctor or care team. It may be helpful, particularly if your child has complex needs, to take a letter with you from your care team. This can help you if you need to seek medical advice whilst on holiday. In addition, letters from your care team can be useful to prevent any problems with airport security when you are travelling with medical equipment.
• Remember to take extra supplies – emergency and replacement sets - with you and to pack at least some of these in your hand luggage in case your main luggage goes astray.
• Use a large dressing to avoid getting sand near the vesicostomy site as this can irritate the skin.

Problem solving

Balloon will not deflate

If you cannot extract water from the balloon with the syringe:

1. Ensure that the syringe has been inserted correctly. If the syringe has been pushed in too far or not far enough, water will not be expelled from the balloon.
2. Ensure that the recess in the balloon valve is clean. Clean inside the recess with warm water (cotton buds are useful for this) then try to insert the syringe again by pushing it firmly into the valve with a push and twist motion.
3. If the balloon will still not deflate you should contact a member of your care team within working hours to check the nature of the problem.

Less water than expected during routine change of water

Balloon may be perishing. Prepare to change the vesicostomy button.

Leakage of urine from around the vesicostomy button

Leakage may occur for a number of reasons including:

• because the bladder is full – drain the bladder
• because the retaining balloon has perished – check the condition of the balloon by changing the water
• because of bladder spasm – discuss with your care team

Sore skin

• Redness or soreness can occur around the vesicostomy button because the body sees it as a ‘foreign body ’
• Clean and dry the area frequently.
• Call your community nurse if the stoma is:
  • persistently red and sore
  • the stoma emits an odour
  • the surrounding skin is swollen
  • if you observe pus
  • there is bleeding from the site.

Overgranulation – seen as clear/brownish discharge and occasional bleeding or has pinkish raised tissue around the site of the vesicostomy button

Granulation tissue is the result of the body trying to repair itself. You may recognise overgranulation as a clear brownish discharge and occasional bleeding or as a pink raised tissue around the site of the vesicostomy stoma. The tissue may increase rapidly and require treatment if this happens; contact your community nurse or nurse specialist for advice. If bleeding occurs or a large amount of tissue builds up, contact a member of your care team for advice.

Vesicostomy button displacement (‘fallen out’)

If a tube does fall out a new tube must be inserted as soon as possible as the stoma (‘hole’) will start to close very quickly (within one to two hours). If the stoma does close surgery will be needed. The following describes action to take in different scenarios if your child’s vesicostomy button displaces:

Scenario 1: The vesicostomy button has displaced and you have been taught how to replace it.

Stay calm.

Follow instructions as detailed in section “Undertaking a change of your child’s vesicostomy button”.

Due to the need to insert a new button device without any time delay, it is acceptable to provide less attention to the strict sterile technique. The priority in this scenario is to prevent the tract from closing.

Scenario 2: The vesicostomy button has displaced and you have not been trained to insert a new vesicostomy button, or you don’t have a spare tube.

• Gently push the tube which has come out back into the tract.
• Place tape over the top of the tube to secure it to the skin.
• Do not use this tube.
• Seek urgent advice by contacting either your community paediatric nurse or your nurse specialist. If they are unavailable, your child will need to attend your local emergency department.

If possible, telephone the emergency department before leaving home to let them know you are coming in and that your child needs to have a vesicostomy button passed. This will give the department time to find your child’s notes etc. Tell the emergency department what type of vesicostomy button has become displaced. Ensure you take your emergency kit box with you.

If you are unable to insert your regular sized tube

If you are unable to insert your spare vesicostomy button into the tract the stoma may have started to close. Surgery may be avoided if a smaller sized tube can be inserted in the first instance and then the tract dilated.

1. Attempt to pass a smaller tube. (This may be a smaller sized catheter).
2. Tape the tube to the skin.
3. Do not use this tube.
4. Contact a member of your care team or Accident and Emergency department immediately and explain what has happened. Provide as much information as you can regarding the type/size of tube your child usually uses.

Blood can be seen in the urine (called ‘haematuria’)

To see blood in the urine (pink urine) is common when the vesicostomy device is initially inserted/after a change, and this usually settles after a few days. If the haematuria continues or fresh red blood is seen, please contact the clinical nurse specialist team.

The wound on the abdomen is bleeding

A small amount of bleeding is not unusual in the first 24 to 48 hours after insertion, immediately after a change of a vesicostomy button or when the button has been inadvertently pulled. If the bleeding persists phone for advice (see numbers at end of leaflet).

Your child develops fever

If your child has no obvious cause for their fever (for example, they have they developed a cough or cold) then it is important to contact us (use numbers provided at the end of this leaflet). The wound will be checked, and a urine sample collected to check for a urine infection.

Your child has intermittent episodes of short-lived acute pain

This is likely to be caused by bladder spasm (i.e. the device has moved inside the bladder and touched the bladder wall causing a bladder spasms). Medication can be given to help these.

Your child’s vesicostomy button is not draining

Check for any twists in the extension set that might be preventing the urine from flowing freely. If there are no twists, phone your community nurse or nurse specialist as the tube may be blocked.

What follow-up will my child need?

All children will be reviewed after discharge. You will be advised at the time of discharge what follow-up plan is advised for your child.

Chaperoning

During your child’s hospital visits they will need to be examined to help diagnose and to plan care. Examination, which may take place before, during and after treatment, is performed by trained members of staff and will always be explained to you beforehand. A chaperone is a separate member of staff who is present during the examination. The role of the chaperone is to provide practical assistance with the examination and to provide support to the child, family member/carer and to the person examining.

Details of your/your child’s low profile balloon retained vesicostomy button

Brand of tube:
French size (Fr):
Length of tube (cms):
Balloon volume (mls):
Date of Insertion:
Dates of tube changes:

Contact numbers for your care team

• Nurse specialist (paediatric surgery): 01223 586973
• Community children’s nurse
• Home delivery company

Name of child:
DOB:
NHS number:
Contact details for care team:
Date written:
Review date:

Date: . . . . . . . . . . . . . . . . . . . .

. . . . . . . . . . . . . . . . . . . . has had insertion of vesicostomy button

Size: 14Fr, length . . . . . . cm

Date inserted . . . . . . . . . . . . . . . . .

Volume of water in balloon: . . . . . . . . ml

Plan of care

Goals

• To assist child to empty bladder fully
• To prevent complications eg infection, Infection, over granulation or Tube blockage

Hygiene and skin care

• Wash hands thoroughly before and after any procedure involving handling the vesicostomy
• Carers to wear appropriate non sterile gloves
• Clean around vesicostomy site daily with clean, warm soapy water
• Any problems with the tube contact the Clinical Nurse Specialist/Children’s Community Team

Routine care of vesicostomy button

• If vesicostomy button looks loose or more prominent then check the volume of water in the balloon
• If less than the recommended amount then remove old water and put the recommended amount in the balloon and prepare to change the device
• Water in the balloon should be checked every 2 weeks
• Turn the button 360 degrees weekly
• If the area around the button becomes sore or over granulated then this can be treated with topical applications. Discuss with community nurse/nurse specialist.
• The extension set should be washed after each use in soapy water, rinsed and allowed to ‘air dry’ with the clamps open. Any additional cleaning instructions are detailed below:

Emergency care of vesicostomy button

If the vesicostomy button has totally fallen out you can insert a new one if you have been shown how to do this. If not, insert the old one (or a Foley catheter) into the hole and tape securely in place which will prevent the hole from closing.

Contact community nurse/nurse specialist/Emergency Department

Frequency of bladder drainage

Complete below for each individual child

Troubleshooting

The stoma is persistently red

Contact your community nurse.

The skin surrounding the stoma is swollen or red

Contact your community nurse.

There is pus around the stoma

Contact your community nurse.

The stoma persistently bleeds

Contact your community nurse.

There is leakage around the button

Contact your community nurse.

Signature of nurse: . . . . . . . . . . . . . . . . . . . . . . . . Date: . . . . . . . . . . . . . . . . . . . . . . . .

Signature of parent: . . . . . . . . . . . . . . . . . . . . . . . Date: . . . . . . . . . . . . . . . . . . . . . . . .

Please note: signature of nurse and parent/carer indicates that the care has been negotiated

Supplies information

Product:
Size: Width 14Fr, Length . . .
Product code:
Quantity: One as a spare to change every 3-6 months

Product: Extension set
Length:
Product code:
Quantity:

Product: Funnel to ENFit adaptor
Size: One size
Product code:
Quantity:

Also to facilitate overnight ‘free drainage’ will require:

Product: Overnight Catheter, Urinary Drainage Bags 2ltr
Type: Coloplast Simpla S2
Code: 320902
Quantity: X1 to be used per night (30)

Product: Catheter Restraining, Strap - ‘G STRAP’
Type: Coloplast
Code: 383001
Quantity: 1 Pack

For the overnight drainage products [ child’s name ] has already been registered on [name] Home Delivery (Tel: 0800 )

If you have any queries, please contact:

The ward you were on: . . . . . . . . . . . . . . . . . . . . . . . . .

Your nurse specialist: 01223 586973