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- What is a tracheostomy?
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This speech is created by using air trapped in the mouth or throat and some children learn it spontaneously. While it can be an effective way for your child to speak to close family and friends, this type of speech can be more difficult to understand for people who are unfamiliar with your child. There are many different types of sign language developed for different needs and abilities.
Makaton and British Sign Language are two examples. Makaton is frequently recommended for young children to help encourage their language development and to reduce their frustration. The signs are produced alongside speech so do not interfere with development of spoken language. This requires that children mouth words as they would in normal speech and so an electrolarynx tends to be suitable for older children. Communication with your community team will start at the time the tracheostomy is inserted. During your stay at GOSH, you will also meet the ward social worker to discuss what support you might need while you are here and what help you and your child might benefit from when you go home.
This covers financial, emotional and practical support and help, as well as information and advice. He or she can also refer you to your community social services' disabled children's team. This team will then contact you to discuss your child's needs further and what support may be available in your local area. Sometimes plans for going home are made once your child has been transferred back to your local hospital, but arrangements are usually made from GOSH.
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Going home will feel like a huge step; you may feel eager to get back to family life at home, you may also be concerned at the thought of coping by yourself. These are all very normal thoughts and feelings for families taking a child with a tracheostomy home for the first time. Your community nursing team will be available to advise and assist you when you are at home. Try to remember that all the staff are here to help you. Working in partnership with the family, we aim to provide the best and safest care for your child, both here and at home.
A list of recommended equipment and supplies will be sent to your health visitor or community paediatric nurse who will be responsible for supplying them for use at home. A copy will be given to you so that you can check that you have all the equipment. Supplies will come from your local health authority.
It requires mains electricity. The collection jar must be cleaned every day. The filter should be changed monthly or earlier if it becomes discoloured. The suction pressures will have been set before you go home and this should not be altered. It can also be run off the mains. The portable suction unit should always be left on charge when not in use. The collection jar and suction tubing are easy to remove and should be cleaned daily. Suction pressures cannot be regulated on these pumps so should only be used in an emergency.
You will be shown by your community teams how to use all your equipment before your child goes home. If you have any problems with any of the machines please contact your health visitor or community paediatric nurse.
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Equipment should be cleaned with a mild detergent in warm water and rinsed and dried thoroughly. All suction pumps should be checked and serviced at least once a year as per your local policy. Your community team will advise you about this. It would be better if you were housed in ground or first floor accommodation, as getting up and down stairs with suction equipment, as well as your child, can be difficult. The ward social worker will be able to advise you about this.
It is essential that you have a telephone in the home before discharge from hospital. 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. 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. A parent looking after a baby or child who needs more care than another of the same age is entitled to claim DLA.
This benefit is tax-free and non means tested and is paid at three different levels, according to the amount of care given. A child with a tracheostomy should receive the highest level of payment. Forms are also available in the social work department at GOSH.
If you are not already getting Income Support and have to stop working due to care needs or were claiming Job Seekers Allowance but are no longer available for work, you may be able to claim this benefit.
Income support is made up of personal allowances and premiums for you and your partner. If you receive the high rate of the care component of DLA, you will additionally be entitled to the severe disability element of CTC. If you are still paid these extra amounts for your children through Income Support, then this will be increased in a similar way.
It is important that you claim CA and inform the Tax Credit Office on as soon as possible after the award of DLA as backdating is usually for a maximum of three months. When you receive Carers Allowance, you will be paid separately and the amount of CA will be deducted from your Income Support. However, a Carers Premium should be added to your Income Support, which means you will be better off each week. If your family has a partner in work for 16 hours or more a week, you are likely to be entitled to a Child Tax Credit CTC. This will increase or you could become entitled if your income was previously too high in the same as for those on Income Support.
The Family Fund helps families with severely disabled children to have choices and the opportunity to enjoy ordinary life. They give grants for things that make life easier and more enjoyable for disabled children and their families, such as washing machines, driving lessons, hospital visiting costs, computers and holidays.
Your ward social worker or family support worker can apply for you while your child is in hospital if your need is immediate and this will be dealt with straight away. This will take a lot longer. This used to be called respite care. It will of course have to be provided by a fully trained tracheostomy carer. Some get help from the local health authority and some through community social services. If your child needs very frequent suctioning at night, you may become too tired to cope by day.
The health authority can sometimes provide help at night, using carers with nursing skills or training in the care of a tracheostomy.
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Short breaks can be provided by disabled children's teams, for instance, so you can have some time in the day to go shopping or spend more time with your other children. The usual way of offering this is increasingly through the Direct Payments scheme. These are cash payments which can be made to you by the community social services disabled children's team once they have met you and assessed your child's needs.
They can be made to disabled people aged 16 or over, to people with parental responsibility for disabled children and to carers aged 16 or over in respect of carer services. A person must be able to consent to have a direct payment and have the capacity to manage one, although they can have assistance to manage their payment on a day-to-day basis.
The aim is to give families more choice and control over their child's care, and to give more flexibility in how it is provided. The law has been changed so that it is a duty for your community social services to make direct payments. This means that councils must make a direct payment to eligible individuals who are able to provide consent.
Living with a tracheostomy
Direct payments should be discussed as a first option when your child is assessed by the disabled children's team. You can obtain more information from the Department of Health website under Direct payments. Try to treat your child as normally as you can. Children who are overprotected or treated as sick can become demanding. Your child is only 'different' in the way he or she breathes and will be happier if rules stay the same and daily life can carry on almost as before.
Most babies and children with tracheostomies will have no problems feeding. However, some may experience difficulties. Your child may find it hard to swallow saliva or cough during feeding. Food or fluid may come out from the tracheostomy. If your child is having swallowing difficulties, the speech and language therapist will assess your child and recommend ways of improving his or her feeding in conjunction with the medical and nursing team. Most babies with tracheostomies can be fed like any other baby, but they should never be left alone with a bottle in case they start to choke.
Older brothers or sisters can help with feeding but an adult should always be there. It is a good idea to use suction before a feed as secretions tend to increase with feeding.
This may also avoid the need to suction for a while afterwards coughing brought on by suctioning may make the baby sick. Be careful that milk or food does not get into the tracheostomy tube. A bib without a plastic liner could be used to prevent this. Your child can eat and drink normally, but watch that fingers or food are not placed in the tracheostomy tube. Give plenty of fluid each day to help maintain hydration. Avoid using suction right after a meal if possible in case it makes your child sick.
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 manual suction pump handy just in case.
What is a tracheostomy?
For hair washing your child should be laid on his or her back in shallow water or held tipped back in the bath and the hair washed by spraying or pouring water from a cup. Another method is to use a 'shampoo shield' available from baby equipment stores 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.
A bib could be used to prevent splashing into the tube. Avoid covering the tracheostomy with tight clothing and avoid clothes that shed a lot of fibres that could get into the tube. Remember that the tracheostomy provides a direct route to the lungs. Smokers should go to another room or go outside.