Coping with limb reconstruction surgery

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.

What we have learned from other families

We know that children who have been through limb reconstruction surgery can find things difficult with:

• needing their parents for many basic physical needs
• the length of treatment
• the repeating routines of physiotherapy and pin site cleaning
• boredom and frustration
• being physically uncomfortable
• missing out on normal activities
• other people’s reactions to the external fixator (cage)

We know that parents and carers can be stressed by:

• the length of treatment
• the growing needs of their child
• the hard work involved
• seeing their child upset or uncomfortable
• worry over unexpected complications
• having to take time off work for hospital visits
• trying to balance the needs of other family members

We know that families seem to cope better when:

• they have a better idea of what treatment involves and its impact on family life
• they take things one at a time over the treatment period rather than thinking that the progress will be quick, smooth, and trouble-free
• they keep a normal life where possible during treatment for themselves and their child, rather than stopping everything until treatment is over
• both child and the main carer have a regular break from each other
• the whole family share their feelings during the treatment, rather than putting on a ‘brave face’ when difficulties come up

Many families have found that contact with other families who are going through or have been through limb reconstruction surgery is also helpful.

Preparing for the operation

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:

• humour
• talking with each other
• taking one day at a time
• having a planned lifestyle

Then make a list of things that might hinder you, such as:

• not working as a team
• not talking about your worries
• finding it difficult to accept how things are going
• only having one parent or carer to help with getting through the process
• feeling like you cannot ask for help when you are struggling

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 does not find it easy to talk things through or work as a team, you might decide to have regular family talks before the surgery.

Do not forget to include any siblings, as having all the focus on the child having the surgery can lead to siblings 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.

Coming into hospital

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.

The operation

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.

After the operation

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.

Pin site cleaning

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

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.

Going home

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 will not 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.

Mixing old and new routines

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. It is easy to get stuck in a cycle of ineffective nagging and sulky resistance.

Some ways of getting your child to help with these procedures are:

• making wall charts to mark off tasks done each day with bright colourful stickers
• letting them win a small token towards a wanted item or day out by completing the tasks without fuss
• it can be helpful to involve the other parent or another supportive carer to help get tasks done

Beating boredom

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.