Tracheostomy: a guide for parents and carers

Contents list

• What is a tracheostomy?
• What to expect before the tracheostomy
• What to expect after the tracheostomy
• Learning to look after your child’s tracheostomy
• Speaking with a tracheostomy
• Eating and drinking with a tracheostomy
• Changing the tracheostomy tube
• Complications and emergencies
• Planning for your child to go home with a tracheostomy
• Living at home with your child and their tracheostomy
• How long will your child need their tracheostomy?

Who is this leaflet for?

This leaflet is for parents and/or carers whose child is going to have a tracheostomy. It will be normal for you to be feeling anxious at this time and you will have lots of questions about what it will mean for you and your child. However, a tracheostomy can not only be lifesaving, but life enhancing too and with the proper preparation your child can enjoy a full and active life.

What does this leaflet include?

This leaflet explains all about your child’s tracheostomy and gives you information about what to expect whilst they are in hospital and to prepare you if your child is going to go home with their tracheostomy.

It will explain what a tracheostomy is, why your child needs it and how to look after it.

What is a tracheostomy?

A tracheostomy is a hole (called a stoma) made in the front of the neck and the windpipe (trachea) which is held open by a tracheostomy tube (breathing tube). Your child will breathe through the tracheostomy tube instead of their nose and mouth.

What are the benefits of a tracheostomy?

Your child’s healthcare team will have explained why your child needs to have a tracheostomy. They may have a blockage (obstruction) in their upper airway passages (throat and windpipe) which makes breathing difficult. The tracheostomy will make breathing easier for them. The tracheostomy can also be used to help clear mucus and saliva (called secretions) from your child’s airway.

Some children need support from a machine (ventilator) to help them breathe. A ventilator can be connected to a tracheostomy if they are going to need this support for a long time.

What does a tracheostomy tube look like?

There are many different types of tracheostomy tube and your child will be given one that most suits their needs. Tracheostomy tubes are made of a plastic or silicone material and are available in different sizes. The type and size of your child’s tracheostomy tube will depend on their age and the size of their airway. The tube will either be a paediatric tube (for children) or a shorter neonatal tube (for babies). An older child or teenager may need to have an adult sized tracheostomy tube.

Here are some examples of tracheostomy tubes:

What to expect before the tracheostomy

Your child’s ear, nose and throat (ENT) surgeon will perform the tracheostomy. The operation will be carried out under a general anaesthetic in theatre and will take about 45 minutes. The surgeon will meet with you to explain the operation in detail, discuss any worries you may have and ask you to sign a consent form.

You will meet the tracheostomy nurse specialist who will prepare you for what to expect and answer any questions you have. They will show you what a tracheostomy tube looks like and some of the special equipment used to look after it.

If your child is older we can talk to them about what to expect and show them what their tracheostomy tube will look like. A younger child may like to have a soft toy with a tracheostomy tube which can help prepare them for the tracheostomy:

What to expect after the tracheostomy

After the operation, your child will spend some time in the recovery area before returning to the paediatric intensive care unit (PICU) or High Dependency Area (HDU) as they will need close attention at this stage. If your child is experiencing pain from the operation they can be given medication to make them more comfortable.

You will see the tracheostomy for the first time. This is what it will look like:

The tracheostomy tube will be held in place by cotton tapes around the neck. A tracheostomy dressing will be placed around the stoma. It is normal for the dressing to be stained with blood and secretions to begin with. Your child is likely to need oxygen to help them breathe for the first few days after the tracheostomy. This will be given through an oxygen mask which is placed over the tracheostomy tube.

For the first week you may see long stitches taped down on to your child’s chest. These stitches help to keep the stoma open until it is healed. The stitches are temporary and will be removed when the tube is changed.

You need to be aware that your child may not be able to speak or cry after their tracheostomy. This is because they will be breathing through their tracheostomy tube rather than their nose and mouth and the airflow needed to make a voice or sound does not reach their voice box. This will be upsetting for you but your child’s speech and language therapist will support you with this (see section ‘Can my child speak or cry with their tracheostomy?’ later in this leaflet.)

What will happen during the first week?

During the first week you are likely to feel overwhelmed at the amount of care your child requires. This is because the tracheostomy is new and needs special attention at this stage. For this reason your child will be closely supervised. The nursing staff will be providing all of your child’s tracheostomy care during the first week and until you become more familiar with the equipment and routines.

For the first seven days the opening in your child’s neck (stoma) will look red and sore and may bleed. During this period the area around the stoma will need careful cleaning at least once a day. A special dressing will be placed around the stoma, behind the tracheostomy tube to protect the skin.

Your child may produce lots of mucus or phlegm (secretions) which the nurses will help them remove from their windpipe (trachea) by passing a tube (called a suction catheter) into the tracheostomy tube. This will make your child cough. When you watch this for the first time you may be alarmed and upset but it is not painful for your child. It is important in order to clear your child’s airway and make breathing easier for them.

One of the following posters will be displayed for the healthcare team.

When is the tracheostomy tube changed?

After one week the tube will be changed for the first time by either your medical team or the tracheostomy nurse. This is usually done with your child awake and in PICU or HDU. Removing and replacing the tracheostomy tube will not be painful for your child. We will remove all the stitches at this time which will make the area feel more comfortable for your child.

If your child is older and has an adult’s tracheostomy tube, the tube can stay in place for up to one month before it needs to be changed.

What happens for the remainder of your child’s stay in hospital?

Your child will stay in hospital until they are medically stable and well enough to go home with their tracheostomy. During the time they are in hospital you will learn how to care for your child’s tracheostomy so you have the skills and confidence to look after it when your child leaves the hospital. It will be normal for you to feel anxious and worried about this but you will be fully supported by your child’s healthcare team.

Occasionally, some children will only need their tracheostomy whilst they are in hospital and it can be removed before they go home. This leaflet will still be useful for you in understanding how a tracheostomy is looked after and you may wish to be involved in caring for your child’s tracheostomy.

Learning to look after your child’s tracheostomy

When you are used to observing the nursing staff caring for your child’s tracheostomy, you will begin to learn how to look after the tracheostomy yourself. You will begin a training programme which includes all the skills and activities you will need to look after the tracheostomy at home.

These include how:

• to suction the tracheostomy tube
• to humidify the tracheostomy
• the tracheostomy is held in place
• to look after the stoma
• can your child speak or cry with their tracheostomy
• can your child eat and drink with their tracheostomy
• to change the tracheostomy tube
• to recognise problems or emergencies and what actions to take

Suctioning the tracheostomy tube

After your child has had their tracheostomy, they will not be able to cough as well as they normally do to clear secretions (mucus) from their (trachea) windpipe. The tracheostomy tube can irritate the trachea and cause the production of extra secretions. Suction is required regularly to your child remove these secretions. Suctioning is not painful for your child, but it can be distressing to watch at first as it will make them cough.

At first your child will need suction often, but over time your child’s body gets used to the tracheostomy tube and will need less suctioning. The tracheostomy tube and the trachea must be kept clear of secretions for two main reasons:

• If the secretions are allowed to build up, they will block the tube and your child will be unable to breathe.
• Secretions which are not cleared could result in your child developing a chest infection.

How will you know when to suction your child’s tracheostomy?

If your child is young or is a baby they will not be able to tell you that they need suction so you will need to learn how to recognise when secretions are building up inside or below the tube:

• breathing is noisy (the sound of air bubbling through secretions)
• breathing is faster or working harder to breathe
• secretions at the tracheostomy tube opening
• a cough with the sound of secretions in the tube
• change of skin colour (blue around nose and lips)
• drop in oxygen levels (if your child is monitored)
• restless or unsettled

How do you suction your child’s tracheostomy?

Make sure you have all the equipment you need ready:

• suction unit (fully charged if using a portable unit)
• suction catheters
• suction tubing
• bowl or bottle of tap water to flush the tube

1. Wash your hands/or wear gloves if you prefer (unless suction is required in a hurry)
2. Turn on the pump and set the pressure on the suction dial as instructed by your healthcare team (this will be between 10 – 20 kPa).
3. Gently insert the catheter into the tracheostomy tube to the depth instructed by your child’s healthcare team (this will be the length of the tracheostomy tube).
4. Apply suction by covering the vacuum port (see below) with your thumb, and slowly pull the catheter out of the tracheostomy tube (this should only take between 5 and 10 seconds)
5. Repeat the suction if your child still needs suction (with a new catheter each time). Give your child time to catch their breath between suctions.
6. Disconnect the catheter from the tubing and dispose of it as instructed. Clear the tubing by suctioning a small amount of water through it. Discuss waste disposal with the ward staff as different arrangements may need to be made at home.

How much suction will your child need?

The amount of suction your child will need can vary. They can produce more secretions if they are unwell. If you are noticing any changes in the secretions or having to suction more often than normal, your child may be developing a chest infection and need medical attention.

When you are suctioning it will be important to look at the secretions to see if they have changed from their normal appearance:

• Have they changed colour (yellow or green)?
• Are they thicker than normal?
• Do they have an unpleasant smell?
• Can you see specks of blood?

Are there any other reasons to suction besides the removal of mucus?

Though removal of mucus is the main reason for suctioning, there are a few other situations where suctioning may be necessary:

• If your child is sick they may not have the ability to control their vomit and it could fall into their windpipe. If this happens suction the tracheostomy tube immediately and if you see vomit in the suction catheter contact your healthcare team.
• Suctioning may be needed is if water gets accidentally splashed into the

tracheostomy tube. To help avoid this make sure the water level in a bath is shallow and covers the tracheostomy with a protective shower bib.

What is humidification and why is it important for a tracheostomy?

Humidity (moisture) is a very important part of your child’s tracheostomy care. The nose and mouth normally humidify the air your child breathes, keeping the windpipe and lungs moist and healthy. After the tracheostomy, your child will breathe through the tube instead of their nose and mouth and the air will not be naturally humidified. The air entering the lungs will be too dry causing damage to their airways and their secretions will become thick and sticky.

Your child may find it more difficult to cough and clear their secretions and you may finder it harder to remove the secretions when you suction. The secretions may stick to the inside of the tracheostomy tube which may lead to a blocked tracheostomy tube and your child will not be able to breathe. So that this doesn’t happen, your child will need a different way of humidifying the air they breathe. There are different humidification systems available for your child to provide them with the moisture they need:

• If your child is receiving oxygen through a mask this will be humidified automatically with a humidification machine
• Heat Moisture Exchanger (HME) – commonly known as ‘Swedish Nose’ or ‘Trachphone’ which attaches on to the end of the tracheostomy:

How is your child’s tracheostomy tube held in place?

Your child’s tracheostomy tube is held in place by Velcro tapes or cotton tapes which need to be changed when soiled or wet. It is essential that the Velcro or the knots are secure and the tension of the tapes is correct. If they are too tight your child will experience discomfort and the skin may blister. If they are too loose the tube can fall out or be pulled out.

How is the collar changed?

This will usually need to be done only once a day, usually at the same time as the dressing change. It is essential to change tapes with two people so that the tube does not fall out. One person will hold the tracheostomy tube while the other changes the collar.

1. Wash your hands
2. Position your child on their back with the neck supported over a rolled- up towel under the shoulders. If your child is very young it may be easier to wrap them in a blanket so they are lying still.
3. Suction if necessary
4. Carefully hold the neck plate (flange) of the tracheostomy tube to prevent it falling out (one person)
5. Remove the dirty collar (second person)
6. Clean and dry around the neck and check skin for soreness
7. Thread the new collar through the holes in the neck plate (flange) and secure around the neck
8. Continue to hold the tube in place (one person) and check the tension of the collar (second person). It should be possible to slip one finger comfortably between the collar and the neck.

How to look after the stoma

The tracheostomy tube enters the windpipe (trachea) through a hole (stoma). After a tracheostomy, it can take several weeks for the edges of the stoma to heal completely. During this time it will be important to keep the skin around the stoma clean and dry. A tracheostomy dressing is placed underneath the tracheostomy tube to soak secretions from the stoma away from the skin so that the skin does not become sore. This dressing should be changed every day (or more often if it is wet and soaked in secretions). Sometimes mucus dries around the stoma and the tube forming crusts. These need to be removed with moist gauze. When you are changing the dressing, check the skin around, above, below and behind the stoma for red or irritated areas. A barrier cream can be used to protect the skin if it becomes sore.

What is granulation tissue?

Tracheostomy tubes can cause the skin to build up too much tissue (called ‘granulation tissue’) in and around the opening to the stoma. You would recognise this by its bumpy, soft appearance. If left untreated it will continue to grow bigger, can cause bleeding and can sometimes make it difficult to change the tube. Discuss this with the tracheostomy nurse specialist/community nurse if this problem arises at home as granulations need to be treated or removed.

Speaking with a tracheostomy

Crying, talking and making noise with a tracheostomy may be difficult for your child. The speech and language therapist will discuss ways to support your child’s communication skills and needs. They will help you to find ways to help you and your child communicate, whether this is speaking, gesture, crying or babbling.

Some children may be able to have a special valve (phonation valve) to help with making voice, but this is not suitable for all children. The speech and language therapist will discuss whether this is something your child can try.

Eating and drinking with a tracheostomy

Children have different eating and drinking needs following tracheostomy. All children will be seen by the speech and language therapist as they help with feeding/swallowing.

The speech and language therapist will discuss what plans you had for feeding and will look for the best way to help oral feeding, if this is possible. The support is about checking whether a child can feed safety and that they are not at risk of aspirating (food/drink going down the wrong way into their windpipe/lungs).

Changing the tracheostomy tube

Why does the tracheostomy tube need to be changed?

The tracheostomy tube is narrow and secretions can easily build up inside. As a result the tube may become blocked so your child cannot breathe. To avoid this happening the tube is changed regularly. We recommend that the tube is changed once a week (or more often if the secretions are thick or your child has a cold/chest infection).

As parents you will feel particularly anxious about learning this skill but you will be fully supported until you are able to change the tube on your own. Be assured that by the time you take your child home you will be able to change the tube confidently.

A tracheostomy tube change must be carried out by two people;

• one skilled to change the tube
• one to assist with the procedure

How is the tracheostomy tube changed?

If you have a baby or a young child it can be easier to wrap them in a blanket so that they stay still during the tube change. A rolled up towel may be placed under your child’s neck to make the tube change easier.

Step by step guide to changing the tracheostomy tube

1. Begin by preparing your equipment:

• sterilized tube and introducer - check correct size and that the tube is not damaged or faulty
• smaller sized tube in case the usual size will not go in
• water-based lubricating gel
• tracheostomy collar
• tracheostomy dressing
• scissors

2. Holding the neck plate slide the introducer into the tube

3. Apply a thin coating of lubricating jelly to the tube

4. Whilst the assistant holds the tracheostomy tube in place, cut the tracheostomy collar behind the knots, remove the collar and dressing. Remove the tracheostomy tube.

5. Inspect the stoma area

6. Insert the new tracheostomy tube

7. Remove the introducer

8. Whilst the assistant holds the new tracheostomy tube in place, clean around the stoma and neck with saline and gauze

9. Slide the new tracheostomy dressing behind the neckplate

10. Place the tracheostomy collar around the neck and fasten to the tracheostomy with bows.

10. Place the tracheostomy collar around the neck and fasten to the tracheostomy with bows.

11. Finally, check the tension of the collar is correct and tie cotton tapes into a knot. The assistant can now let go of the tracheostomy tube.

12. The tube change is completed.

Sterilizing and reusing tracheostomy tubes

Some tracheostomy tubes can be cleaned and reused. Each tube set can be used up to 6 times in total (reused up to 5 times). We recommend you rotate two sets for a period of up to 12 weeks and made a note on your calendar when they need to be thrown away.

On day of tube change:

1. Place cleaned tube and introducer separately in an electric steam sterilizer (e.g. baby bottle sterilizer). A microwave sterilizer is not suitable.
2. Complete the sterilization in accordance to sterilizing unit instruction manual
3. Allow tube to cool in sterilizer (unopened) until tube is required
4. Handle the introducer by its handle and the tube by its neck flange (avoiding touching the parts of the tube which sit inside the windpipe

Following the tube change:

1. Inspect the tube you removed for any signs of damage. Throw the tube away if you can see any changes to its normal appearance.
2. Place the tube and introducer separately in a container and soak in hot water to loosen any secretions
3. Clean with washing up liquid to remove all secretions from tube
4. Use foam tracheostomy cleaning swab to clean inside of tube
5. Rinse tube with clean water and allow to air dry
6. Store in a clean container with a lid ready for next tube change

Complications and emergencies

You will also need to learn about problems which can sometimes happen with a tracheostomy tube including:

• What to do if the tracheostomy tube becomes blocked with secretions (mucus)
• What to do if the tracheostomy tube accidently comes out
• How to give basic life support (resuscitation) through the tracheostomy tube if your child stops breathing

What is the ‘Trachicase’?

Your child will be given a blue ‘Trachicase’ after they have had their tracheostomy which will be kept with them during their time in hospital and taken with them if they go home with the tracheostomy.

It will contain everything needed to change the tracheostomy in an emergency:

THE TRACHI-CASE MUST BE CARRIED WITH YOUR CHILD AT ALL TIMES

It contains:

• A spare tracheostomy tube of the same size your child is using.
• A tracheostomy tube one size smaller (to be used if there are difficulties with the tube change)
• Tracheostomy collar
• Tracheostomy dressing
• Lubricating gel
• Scissors

If either parent or carer is likely to be with their child on their own during periods of the day we will provide a ‘ready to go’ tracheostomy tube which will be attached to a Velcro collar making an emergency tube change easier to do single handily.

How will you recognise breathing problems?

Breathing problems are likely to be caused by blockage in the tracheostomy tube or the tube being in the wrong position. Your child may show signs of breathing problems in many different ways. You will notice this because it will be different to their normal breathing.

Typical signs to look out for would be:

• agitation and restlessness, sweating or crying and cannot be comforted
• faster rate of breathing
• breathing is more effortful or heavy
• dusky colour of lips or on the sides of nose
• nail beds are blue or dusky
• child just does not look right

What should you do if the tube becomes blocked?

It is likely that your child’s breathing problems are caused by a blockage of secretions inside or at the end of the tracheostomy tube.

To decide this:

1. Suction the tracheostomy tube.
2. If you cannot pass a suction catheter or you suspect the tube is blocked, change the tracheostomy tube without delay using the emergency tube from your Trachicase (which will already be sterilized).
3. After the tube has been changed assess your child by looking, listening and feeling for breathing for up to 10 seconds.

What should you do if the tracheostomy tube comes out accidently?

1. Stay calm – the stoma is likely to stay open enough for your child to breathe without the tracheostomy tube for a short time
2. Insert a clean tube as soon as you can from your emergency Trachicase
3. If you cannot find a clean tube, insert the same tube that came out. Do not waste time looking for a clean tube.

What should you do if you cannot get the tracheostomy tube in?

If you cannot insert the tracheostomy tube after three attempts:

• Insert the smaller tracheostomy tube from the Trachicase
• Once the tube is in place contact your hospital team as soon as possible as they will need to arrange to see your child
• If you are unable to insert the smaller tube, call 999 as you will need urgent medical assistance.
• Remember to take your child’s Trachicase with you to hospital

Resuscitation (basic life support)

Before you take your child home, you will be given training in how to give your child basic life support with their tracheostomy so that you know what to do if they stop breathing.

If you need to call an ambulance for your child

Remember to tell the ambulance operator that your child has a tracheostomy. The paramedics who arrive may not have any experience of tracheostomy so you will need to continue looking after your child’s tracheostomy.

Planning for your child to go home with a tracheostomy

Taking your child home with a tracheostomy will feel like a huge step; you may be eager to get back to a more normal environment and life but feel frightened and anxious at the thought of coping by yourselves. This is a normal feeling for families going home with their child and their tracheostomy. When we plan for your child’s discharge we will arrange meetings with your hospital team and community team to organise the plans and preparations needed for you to look after the tracheostomy at home.

Sometimes children are transferred back to their local hospital before they are discharged home so that a team closer to home get to know you.

The following things will be discussed before you go home:

• Equipment and supplies
• Housing
• Telephone
• Power cuts
• Financial help
• Help at home and respite care
• Getting out and about
• Schooling
• Follow up reviews at the hospital

What equipment and supplies will your child need?

Your Children’s Community Nursing team will be responsible for ordering and supplying all the equipment and products you will require at home to look after the tracheostomy. You will need:

• 2 suction machines (1 portable with an internal battery for use when an electrical supply is not available)
• Portable nebulizer machine and chamber
• Tracheostomy masks
• Oxygen saturation monitor (if required)
• Tracheostomy tubes
• Tracheostomy collars
• Suction catheters and tubing
• Tracheostomy dressings
• Heat moisture exchangers
• Lubricating jelly
• Steam sterilizer (mains operated)

Equipment and supplies will be delivered to your home before your child is discharged. You will need to consider where you will store your supplies at home. It is recommended that spare tracheostomy tubes care kept both upstairs and downstairs and ensure everyone in the household who is involved in the care of your child’s tracheostomy know where supplies are kept.

When you need more supplies you will need to contact your community nurses to arrange for them to reorder the items. Avoid running low on any products as delivery times can be delayed.

Living at home with your child and their tracheostomy

Being back at home with your child and their tracheostomy will be a life changing experience. There must always be someone available to your child who can look after the tracheostomy. The physical demands of the care will be a full time job and your child will need attention both during the day and at night. If this is going to be too tiring for you to do on your own, particularly if your child needs a lot of tracheostomy care overnight, your healthcare team will discuss the possibility of providing carers or respite to share the tracheostomy care. However, although living with your child and their tracheostomy will have its challenges, we can share with you approaches other families have taken to adjust family life and a tracheostomy.

Telephone

It is essential that you have a telephone in the home before taking your child home. It is a good idea to inform the telephone company that you would need urgent attention in the event of a fault on the line. Keep mobile phones fully charged.

Power cuts

Before your child comes home, you should contact your electricity supplier and tell them that you need a continuous supply for medical equipment. They can then put you on their special system for power cuts. It will be useful to keep a torch handy.

Bathing and hair washing

Always stay with your child when he or she is near water. Make sure that the water line is well below your child's waist and avoid too much splashing. A non-slip bath mat is a good idea and you should keep a suction unit handy just in case. For hair washing your child should be laid on their back in shallow water or held tipped back in the bath and the hair washed by pouring water from a jug. Another method is to use a ‘shower shield’ bib and lean your child forwards over the bath or sink. An older child can take a shower with care to avoid the spray going into the tracheostomy.

Clothing

Avoid covering the tracheostomy with tight clothing and avoid clothes that shed a lot of fibres that could get into the tube. Often V necked or buttoned tops are most suitable and make managing the tracheostomy easier.

What will happen at night time?

Many parents worry that they will not hear when their child needs them at night. You may choose for your baby or small child to sleep in your bedroom. Your hospital team may arrange an oxygen saturation monitor to use overnight and advise a baby intercom monitor to be set up at home. Your child may need a carer with them all night if they require a lot of tracheostomy care in order that you are rested for the daytimes.

Play

Your child will be able to take part in most activities. If he or she is a baby or toddler, check that all small toy parts or objects are cleared away in case they are put into the tracheostomy. We advise that your child does not play with dry sand as it may get into the tracheostomy. However, your child can play with wet sand under close supervision. Covering the tracheostomy with a Swedish nose will help.

Be aware that rough play or activity/sports could risk the tube being knocked out of position.

Swimming

Your child will not be able to go swimming as the risk of water entering the tube is too high. Keep a careful watch if your child is paddling or playing near water.

School and nursery

Your child will be able to go to nursery or school with their tracheostomy. They will have a carer with them at all times who is trained to look after the tracheostomy and will be able to perform an emergency tube change if necessary. This carer must not have other duties in the school that would take them away from your child.

The environment around your child

Remember that the tracheostomy provides a direct route to the lungs.

Cigarette smoke could irritate your child’s lungs and it is strongly advised to avoid your child being in the same room as someone who is smoking. Try to avoid spraying aerosols (e.g. deodorant or furniture polish) in the same room as your child.

You may find that sudden changes in climate or environment (for example: central heating, high pollen levels) will irritate your child’s airway, causing coughing or changes to their secretions. You may need to increase their humidification in these circumstances.

Pets

Long-haired pets can cause problems because of the amount of fur they shed. If possible, keep your pet restricted to a different area of the home.

What will you need to take when out and about?

When you are away from home, however short the distance, you need to be prepared and equipped to be able to look after the tracheostomy. Always take the blue Trachicase, suction unit and plenty of suction catheters with you.

When should I call my GP or children’s community nurse

There will be situations with the tracheostomy which are not emergencies, but when your child needs to see a doctor or community nurse.

Examples of these occasions would be:

• redness, skin breakdown, or rashes around the stoma
• fever (temperature)
• mucus is yellow, green, red or blood-tinged, or develops a smell
• any questions or concerns

Your GP or hospital team may recommend your child and yourselves have a yearly flu vaccination.

You can telephone the tracheostomy nurse for advice and support if you are having any difficulties with the tracheostomy (e.g. stoma problems, difficulty with tube changes). They may need to arrange for you to bring your child to the hospital to be seen by the hospital team.

What happens after my child goes home?

Your child will have clinic appointments and assessments by your hospital healthcare team to monitor their tracheostomy.

They will need to check their health and progress of your child’s airway. Your child may need to have a test called a microlaryngoscopy and bronchoscopy (which we call an ‘MLB’). This will allow your ENT doctor to look into your child’s airway using a camera. Your child would have this procedure under a general anaesthetic.

As your child grows, their tracheostomy tube can become too small for them and a larger size (or ‘upsizing’) is needed which can be done in clinic.

How long will your child need their tracheostomy?

Each child’s need for their tracheostomy will be unique to them. Most tracheostomies are needed for months or years, but some children will require their tracheostomy permanently.

During your child’s hospital appointments the medical team will assess your child’s airway to decide whether they need to carry on using their tracheostomy to breathe. The removal of the tracheostomy tube is planned if the team is confident that your child can breathe without it. The eventual goal is to remove the tracheostomy tube from your child. This process is called ‘decannulation’. Most parents have mixed feelings about this and can feel anxious about their child not having the tube any more. We will help you discuss any fears and answer any questions to help you understand the process and prepare for this.

What happens when your child is ready to be decannulated?

Removal of the tube (or decannulation) can be done in a number of different ways but is always closely supervised in hospital. Your child will need a short admission for this to be carried out safely.

Firstly, your child’s airway may be examined in theatre before we can decide to remove the tracheostomy tube. This is called a microscopic laryngoscopy and bronchoscopy (or ‘MLB’). This is a simple procedure carried out under a general anaesthetic which allows your child’s ENT doctor to decide if your child is ready to manage without their tracheostomy tube.

Before we can remove the tube, the tracheostomy tube will be changed to a smaller size than your child normally uses. A plastic ‘cap’ is then placed on the end of the tracheostomy tube to block any airflow in or out of the tube. Your child will be closely monitored during this period before a decision to remove the tube can be made.

This process usually goes well, but sometimes the tube cannot be removed and your child may go back home with their tracheostomy. In these circumstances a plan for another trial decannulation will be made at a later date.

What happens when the tube is taken out?

Your hospital team will remove the tube and a special dressing will be used to seal the stoma to help it heal. Complete closure of the stoma can take many weeks and your child will need to continue using the dressings. Occasionally the stoma does not heal completely and your child may be admitted at a later stage to have the hole closed which is carried out in theatre under a general anaesthetic.

Contacts/Further information

ENT/Tracheostomy Nursing Team

Contact telephone number: 01223 216162 (office hours Monday-Friday)

e-mail Paediatric ENT