Home non-invasive ventilation for mask ventilation via Resmed stellar, Nippy junior & 4/4+

This leaflet is designed to support your child’s transition onto mask ventilation at home. It provides an overview of an aspect of your child’s care, equipment and some day-to-day aspects of using home ventilation. You and your child will receive education about how to look after your home ventilation system.

Ventilator and settings

The long-term ventilation (LTV) team will set up your child’s ventilator and enter the settings during your admission. During the initiation of their ventilation, it may take some time to get the settings right so the team will review your child regularly.

During your admission to Addenbrooke’s to start NIV

To start

To start on non-invasive ventilation (NIV) or continuous positive airway pressure (CPAP) we will admit your child to the paediatric intensive care unit (PICU), the paediatric high dependency unit (PHDU) or a ward area in Addenbrooke’s Hospital.

Your child will meet the LTV team of nurses, medics, PICU team, surgical teams, medical teams, and other allied health professionals (AHPs) that are involved in your care.

We will carry out a sleep study on the first night your child uses ventilation and if required change the settings on the ventilator and carry out a second night on ventilation with a sleep study.

Training

The LTV team will train you and your child how attach the mask, tubing, ventilator and other elements of your child’s care. By the time your child is discharged home you and your child should feel confident in using the machine and troubleshooting the device.

If your child is cared for in other settings, dual homes, respite, any other adults that might care for your child, let the LTV team know so we can plan training.

Once your child starts on ventilation they will need to be in the care of someone who is trained on the device and for their care needs.

If your child receives night-time care, please ensure you inform the LTV team and your care provider as soon as possible to allow planning for training and to reduce any interruptions to your child’s existing care package.

Community support

Depending on your child’s care needs we may refer your child to the continuing care team to support your needs at home with carers.

We have links with East Anglia Children's Hospice (EACH) and other hospices across the East of England, who have a dedicated LTV team that can support your child at home with getting used to the mask and ventilation.

The local community nursing team, GP and other agencies that support your child in the community will be updated after discharge. We will write to them with a discharge letter and other documents and your child will have a copy to show them if needed.

Sleep studies post initiation of NIV

To ensure we are meeting your child’s ventilation needs, a sleep study will take place in hospital at least once a year and depending on your child’s condition more often. We may also perform some home based sleep studies.

The admission for sleep studies will take place on PICU/PHDU or ward environment. When your child attends these admissions, bring all your equipment, mask, tubing, both ventilators (if you have two at home) and other medical equipment required for a hospital stay.

During routine admissions for sleep studies your child will be reviewed by the LTV team. This will include a mask fit, ventilator check, ventilator data download, teaching and updating skills on how to use the device.

The admission for inpatient sleep studies can be one or two nights in duration. If we are going to change your child’s ventilation settings, we may ask your child to stay a second night so we can assess the new settings. If your child is having a sleep study on Ward C3, a parent/carer can stay overnight in the same bed space. If you are admitted to PICU/PHDU, your parent/carer will be offered onsite accommodation to sleep.

If you are having difficulty at home with your mask and ventilation we may ask you to come in for a sleep study earlier than planned.

Learning to use your mask and ventilator at home

Our aim is for your child and family to be happy and comfortable with using the home ventilation system. We aim to achieve optimum ventilation settings to support your child’s medical needs. We also aim to ensure that your child and family understand how to use the mask and ventilator, to set them up and to troubleshoot them independently.

Mask types

The team will decide which type of mask your child requires. There are three types: nasal, oronasal and total face mask.

Mask fitting

The first thing to master is to fit your child with a comfortable and well-fitting mask. You will have been mask fitted by one of the LTV team at Addenbrooke’s either in hospital or as an outpatient. We may have to try a few masks until we find one that fits correctly.

Top tips for mask fitting at home

• When fitting the mask at bedtime, your child can choose to apply the mask first then connect to the ventilator and start ventilation, or to start ventilation first and then attach the mask.
• Use the Velcro and clips strapping to adjust the tightness of the mask. This may take some time to perfect and may need some trial and error.
• The mask needs to be tight enough so air doesn’t leak around the edges of the mask, but not too tight that it hurts your child’s face.
• To check for air leaks, cup your hands around the mask to feel for a leak where the mask meets your face. The most common place for a leak is at the top towards your child’s eyes.
• Ensure you or your child can feel the air leak at the front of the mask, or the top of mask if using a mask with air leak port or exhalation port which sits onto of the head.

During the night your child may roll over and move around so you may need to reposition the mask. If your child cannot manage this themselves you will need to assist your child overnight.

Managing your mask and ventilation at home

1. Common troubleshooting problems at home

The LTV team will teach you and your child how to use and troubleshoot the equipment. Below is a little reminder of some of the main problems faced with home mask ventilation systems. If you are experiencing any problems that cannot be solved at home then please contact the LTV team.

Mask leaking air

Leaks are a common issue with mask ventilation. To prevent leaks, ensure that the mask is fitted properly and is tight enough, remembering how you and your child were shown in hospital.

If you have increasing issues with your child’s mask then contact the team for a possible mask refit. If there is a large leak around the mask then the ventilator might alarm to notify you. If you have a nasal mask you may experience a leak via your mouth, for which the ventilator can compensate.

Mask comfort and fit

When fitting your child’s mask at night-time ensure it is not too tight, as this can damage the skin around where the mask is positioned. Most masks are designed with soft cushioning, so once you have fitted the mask try to loosen the mask.

Dry mouth

Your child may experience a dry mouth or dry nasal passages in the night-time or the morning after using their ventilation. Your child will be assessed if they require a humidifier alongside their ventilator, if so you and your child will receive training on how the use of this.

If you start to experience a dry mouth or complications with dry secretions, then call the LTV clinical nurse specialist (CNS) team the next morning for advice on adjusting humidification settings.

Waking up because of your ventilator

It may take some time for your child to get used to the ventilator at night so, if possible, continue your child’s bedtime routine and bring the ventilator into your child’s routine. Your child may wake in the night, and require assistance to refit the mask once they have turned over or for other cares in the night-time.

2. Skin breakdown

The skin around your child’s nose, mouth, head and also hair can become irritated by the mask and straps.

Keep a close eye on the condition of your child’s skin around where the mask meets their face. The skin can appear red for a few minutes after the mask is removed. This redness can last up to two hours. If it persists any longer than this, the mask may need to be adjusted or changed. If your child has some prolonged redness or skin breakdown then contact the LTV team for advice as soon as possible. The skin around your face is fragile and can take time to heal.

Tips to reduce skin breakdown

• Wash the mask daily to remove any debris and secretions and dry thoroughly. This also reduces the risk of infection.
• Ensure the mask is fitted properly. A mask that is too tight will cause pressure on the skin. The masks are designed to have a good seal without the need to be fitted very tightly.
• There might be some redness in the morning, but it should disappear by the afternoon.
• Mask too small or too big: if you are unsure whether the mask fits properly, please contact the LTV team for a new mask or refit.
• Humidification: if the child complains of too much water in the mask or tubing, contact the LTV team to discuss reducing the humidification temperature.

3. Tips for getting used to the mask at home

Mask establishment: daytime trials

• The team may discuss your child using the mask and ventilator at night-time only. There are some benefits to try using mask and ventilation in the daytime for short periods.
• Trialling the mask in the daytime can make using it at night-time less stressful as your child will become familiar with the feeling, smell and sensation of the mask and ventilation.
• The positives of daytime NIV trials: Your child is awake and you can explain the process of mask fitting and together can troubleshoot problems. You are also able to give your child positive feedback throughout the process.
• If age appropriate, you can attach the mask to a teddy or toy and encourage your child to attach the mask to the toys to help desensitise your child to the mask.
• Ask your child (if able) to describe the mask and its uses to other families and to show it off.
• If able we would encourage your child to help fit the mask themselves (as demonstrated in your training) and how to remove the mask.
• Some of the masks will have leaflets that can aid your child’s understanding of the mask. If they attend school or nursery these can be used to show others and start conversations about their mask and ventilation at home.

Tips for daytime trials of mask use

• Set a limit of how long your child will wear the mask. If using a nasal mask without being attached to ventilator then ensure all tubing is detached so they can breathe well through nose and mouth.
• If using a full face (mask covers nose and mouth) it’s unlikely your child will tolerate time on the mask without being connected to the ventilation. So for daytime mask trials with full face mask, your child should be attached to the ventilator.
• During the time your child is wearing their mask, remain calm and use something to distract their attention, such as their favourite toys or TV shows, and give them lots of positive reinforcement.
• During the time of mask establishment try to be away from lots of noise and distraction (other than the distraction technique you are going to use) for both yourself and child, in a calm area.
• Once your child has tolerated the mask for a period of time, connect the tubing and turn on the ventilator.

Night-time establishment

• The mask and ventilation will become part of your child’s night-time routine, so try and integrate into their usual routine.
• If your child can fall asleep on the ventilator it's more likely they will stay on it for longer.
• At the beginning we aim for the child to manage three to four hours on ventilation, slowly building up over time to a full night’s sleep.
• It’s common for your child to wake up in the night and remove the mask. Check on your child and reconnect the mask and ventilator for the duration of the night.
• Over time they should get used to the mask and wear it for the whole night.

4. Oxygen alongside your ventilator

The team will discuss with you if your child requires oxygen to be used routinely alongside your child’s NIV/CPAP and if so they will discuss an escalation plan including the use of oxygen. The team will show you exactly how to attach the oxygen ports and separate tubing for oxygen.

Once you have stopped ventilation, ensure that the oxygen supply is also turned off to your device.

If your child doesn’t routinely use oxygen the team will show you how to attach it in case of emergency and if your admitted to hospital.

5. Bedroom safety

Before your child’s admission to start NIV or CPAP, there are a few things to consider in your child’s bedroom:

• Ventilator and separate humidifier – Table for ventilator (split level table) so the ventilator is above the humidifier, to allow for water and humidity to drain downwards.
• Height of ventilator – Ensure that the ventilator is not placed above your child’s head. This is to prevent it being pulled onto them in the night time and causing injury.
• Tubing – Ensure the ventilator tubing is free to move in the night if the child moves and to reduce the risk of tubing becoming entangled in the bedsheets.
• Ventilator and power supply – Plug your child’s ventilator and humidifier (if separate humidifier) into their own plug and not into an extension lead. Ensure the ventilator is charging. The team will have discussed how long the ventilator will last on internal battery power.
• Power cuts – Let the team know if your child’s home is prone to power cuts. If so they can provide additional batteries. In such cases we advise you also contact your electricity provider and let them know your home has medical equipment.
• Video/audio monitoring – If your child/young person sleeps in a separate room to carers/parents, then consider the use of video or audio monitoring (age appropriate). This may allow the parent/carer to hear any alarms from the ventilator via the monitor as well as the ventilator itself. You may not need to use video monitoring in the long term but it might help with getting them used to the device. If your child requires night-time carers, ask the care team lead if you can still video monitor with carers in the room.
• Door open – If your child sleeps in a different room, consider sleeping with the door of their room open so that you can hear the possible alarms from the ventilator and if your child calls out to you in the night.
• Oxygen saturation monitoring – The team will discuss if your child requires oxygen saturation monitoring. If this is the case, ensure that alarms are set at appropriate levels for your child’s medical condition.
• Turning off the device and oxygen - When your child has finished using their equipment, ensure the ventilator, humidifier and – especially – oxygen are turned off.
• Humidifier safety overnight – The first few nights at home, check the water level in the humidifier regularly and top up as needed. If allowed to run dry, your child may find the lack of humidity uncomfortable. This can also be a fire risk, so it is advisable to check the water level overnight at least once a night.
• Bedroom sharing – If your child shares a bedroom with a sibling, we advise that the ventilator is placed safely, to reduce the possibility of the device being disturbed.

Safety in vehicles

The team will have discussed with you if your child is required to use their ventilator while travelling in a car or transport. The following tips are to ensure safety of ventilator use during transit.

• Ventilator to be used without humidifier (and detach humidifier).
• Use the dry circuit for use without humidifier.
• Ensure device is fully charged.
• Ensure device is securely placed and not able to move around.
• Put ventilator ‘in use’ or ‘mobility’ bag to protect the device. If you don’t have one of these, contact the LTV team.
• If you need to use your ventilator in transport, a trained adult – not the vehicle driver – should be with the child to troubleshoot the machine and attend to child’s needs.
• If using oxygen with their ventilator, ensure it is securely placed and inform your car insurance company that you will be traveling with oxygen.

Ventilators and accessories

The Resmed Stellar 100/150 ventilator device

Wet circuit and humidifier to be used every night that your team has prescribed your ventilation.

Integrated humidifier H4i and wet circuit set up

Dry circuit for Resmed Stellar ventilator set up – without integrated humidifier

Dry circuit to be used when using ventilator on transient in the car or in an ambulance. If the device is being used for long periods of time without the humidifier, you will need to attach a green filter as pictured below.

If for short periods of time, attach the tubing directly to the blower.

The NIPPY Junior device

Wet circuit and humidifier to be used every night that your team has prescribed your ventilation.

Wet ventilation circuit using a 150 or 550 humidifier

Dry circuit for ventilator set up – without humidifier

Dry circuit to be used when using ventilator on transient in the car or in an ambulance. Not for routine night-time use.

The Nippy 4/4+ and humidifier

Contact information for the LTV team

Please contact the team on 01223 596178 with non-urgent enquiries, Monday to Friday 09:00 (9am) to 16:00 (4pm). We have a voicemail system that is checked twice day. Alternatively, you can email the LTV team.

The contact information above is for non-urgent queries only. If you are worried about your child, escalate via your usual route.

References

1. Bilevel positive airway pressure (BPAP) non-invasive ventilation (opens in a new tab). Great Ormond Street Hospital for Children NHS Foundation Trust: Information for Families, March 2017.
2. Desensitization tips for your child: non-invasive ventilation. Sheffield Children’s Hospital, Lee Richardson, June 2020.