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If your child is having limb reconstruction surgery, you and your child may be feeling apprehensive, excited, or confused. We hope to give you some idea of what is ahead of you as a family and how to cope with treatment. Every family is different and has its own way of dealing with things, but you might find it helpful to hear from the experiences of other families and staff who have worked with them.
At times it may seem that your life has to be planned around the treatment and this may be very stressful for your family. We’re here to inform, prepare and support you through the treatment to make less stress and encourage normal family life.
We know that children who have been through limb reconstruction surgery can find things difficult with:
We know that parents can be stressed by:
We know that families seem to cope better when:
Many families have found that contact with other families who are going through or have been through limb reconstruction surgery is also helpful.
Once you have agreed to the operation, it may be a few months until the operation. It is good to prepare yourselves as a family by reading the information that is given. It will allow your child to tell you any worries they may have before the operation. It can be helpful to write down a list of any questions you or your child has, so you can talk with the medical team about them.
You might find it useful to sit down and make a list of things that you, as a family, can use to help you cope, such as:
Then make a list of things that might hinder you, such as:
If you identify anything that might make things difficult to cope with, try to find some ways to make things easier. For example, if you are a family who doesn’t find it easy to talk things through or work as a team, you might decide to have regular family talks before the surgery.
Don’t forget to include any brothers and sisters, as having all the focus on the child having the surgery can lead to brothers and sisters feeling left out or forgotten. Ask them about their worries and if they have any questions about the operation.
Look at what tasks will come up during treatment and who might be able to do these. It is important to share tasks so that one person is not doing too much by themselves. Finding your support network before the operation is very important.
A fold-up bed can be given to let you stay at your child’s bedside in the hospital. If it is possible for you to stay, your child may cope better, especially if it is their first operation. Bringing a few special belongings and activities helps them feel at home.
If your child is nervous about the operation, you can help by distracting them with books and games. You should also be reassuring and calm so that they stay calm too. Talk over any specific worries you or your child has with the staff, who will willingly explain the procedures again.
Much of the fear of surgery is from the unknown, so most children benefit from being told in advance in simple terms what is going to happen to them in the hospital. They should be able to ask questions about particular things that bother them. How much you say and when you say it depends on the age of your child. A lot of information is given at hospital visits and it is worth checking at home that your child understood fully what is happening.
You may accompany your child to the anaesthetic room. If you wish to do so, let a member of staff know in the ward.
The sight of the external fixator (cages) on your child can be a shock for both of you. Some children react with tears or anger. This is usually for a short time and is natural. Getting used to how life is with the external fixator can take a while. It is hard to get used to all the things that become difficult to do. It is important to stay comforting and calm without fussing around your child too much. As parents, you may find yourselves feeling upset too, and in need of more support, staff will be equally comforting towards you.
After the first day or so the dressings will be taken off from the pin sites and staff will clean the pin site wounds. This can take some getting used to but it does get easier with time. You can help your child by keeping calm and reassuring them. Use distraction if this helps. Your child’s medical team can help you with this. Soon they will be cleaning their own pin sites, with help from you and the nursing staff and may feel happier being more in control.
Physiotherapy exercises start the day after your child’s operation. Although they may hurt at the time, your child is likely to feel more comfortable afterwards. These exercises are important to stretch the muscles and make sure your child gets the most out of their surgery.
Your child will get up walking as soon as possible after the operation. Children are often worried about walking for the first time but the more they practice, the more confident they will become.
Some families cannot wait to get out of hospital but others are nervous about leaving and coping alone. It may feel a little frightening being responsible for all aspects of your child’s treatment and care. It won’t take long to settle down into a regular routine. Having someone supportive around to help is important in the early weeks, and contact with other families having treatment may give you helpful tips about coping.
Children will cope differently with limb reconstruction surgery. When you get home, you might find your child difficult at times and you should be prepared to be more tolerant with moodiness, clinginess or challenging behaviour.
Try to keep your normal lifestyle where possible. Keeping your child busy will help them cope with the treatment. Getting back to school as soon as possible will also help with this.
Make sure that life does not revolve around pin site cleaning and physiotherapy routines or your child may feel angry or bored and may not help as much. Try to give them something to look forward to each week to help.
Night times can be difficult as your child has to learn to get a good night’s sleep with an external fixator on and they may be uncomfortable.
Remember that pin site cleaning and physiotherapy are important parts of treatment, although your child may find them difficult. If your child starts to resist either, try to talk to them about their worries, talk to the medical team, and try to remain firm to get them done. Remember not to criticise them too much, but to praise them every time they help.
Some ways of getting your child to help with these procedures are:
The time it takes to complete tasks may affect your child over the treatment period and it is worth making plans to keep your child busy. Work out which hobbies and activities your child will be able to take part in. Making plans early can help your child have a more positive attitude to treatment. It also means you can get organised in advance. Having a positive goal or target over the treatment period can be invaluable in keeping your child happy and motivated.
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Tel: 020 7706 4232
Contact a Family
209-211 City Road,
Tel: 020 7608 8700
Free helpline: 0808 808 3555
Please note this is a generic information sheet relating to care at Sheffield Children’s. The details in this resource may not necessarily reflect treatment at other hospitals. This information is not intended as a substitute for professional medical care. Always follow your healthcare professionals’ instructions. If this resource relates to medicines, please read it alongside the medicine manufacturer’s patient information leaflet. If you have specific questions about how this resource relates to your child, please ask your doctor.
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