Living with your frame

  • Introduction

    Coping with a child in an external fixator can seem like a daunting task. The aim of this page is to provide parents and carers with information and ideas about ways to cope at home. Please share this information with grandparents, babysitters and schoolteachers, or anyone who assists you in caring for your child.

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    Preparation for surgery

    There are a number of ways that your family and child can prepare for treatment. Attendance at a preadmission clinic will assist you to plan for surgery.

    Diet

    As it is common for children to lose their appetite whilst undergoing treatment, overall fitness and good eating habits prior to surgery will assist in a more rapid recovery. During treatment it is important that your child receives a healthy diet to assist with tissue repair, growth and bone healing. If eating or weight loss become a problem, a dieticians help may be required.

    Physical

    You will meet with the physiotherapist who will give you some simple stretching and muscle strengthening exercises to do before surgery. Following surgery, physiotherapy execrices will be presecribed for your child.

    Assisted stretch for young child

    Smoking

    The Limb Reconstruction service adopts a NON-SMOKING policy. Active and passive smoking is known to have a delaying effect on bone formation, which will prolong healing time (and therefore treatment time).

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    Drugs

    It is important that we know about every medication your child is taking. This includes 'over the counter' drugs, such as Nurofen and aspirin, as well as any vitamins or 'natural remedies'. Some of these drugs affect bone healing and may lead to serious problems

    Psychological

    Open discussion about the treatment amongst family is encouraged, as it helps the child come to terms with the treatment plan. If you think that your child is not coping with the idea of the fixator, please let us know so that we can address these issues prior to the fixator going on.

    Home environment

    If your child is going to be wheelchair bound post operatively, the home environment may need to be modified. The Occupational Therapist and Limb reconstruction nurse  will discuss with you ways in which you can manage the stairs, toilet and bathroom, and bedroom. Equipment required can be hired from the hospital.

    School

    Let your child's school know of the planned surgery. If your child is to be wheel chair bound post operatively, the school may need to install ramps for easy access. The Limb Reconstruction and Lengthening team will liase with the school to advocate for your child if you wish. Children returning to school need to be able to toilet themselves unassisted.

    Ramp

    Clothing

    Clothes may need to be modified to fit over the fixator. The external fixator can be bulky and can catch on clothing. (it can also damage bedding, soft furnishings and car seats.) Clothing needs to be bigger than usual. At preadmission you will be shown examples of clothing to get some ideas.

    Suggestions include:

    • Pull away track suit pants with Velcro or press-studs down the outside seam
    • Underwear or boxer shorts can be worn with press-studs or velcro down the seam
    • Girls often find wearing a long skirt a comfortable alternative to pants
    • Do not buy new or expensive clothing as the fixator often damages clothing
    • It is simple to make a "sleeve" to go over the external fixator, using a tube of material with elastic at each end.
    • Children with a fixator on the thigh are able to wear their usual flat shoes, however those with lower leg fixators may need modification of their footwear. This can be addressed whilst you are in hospital. For lower leg external fixator short ankle socks are also needed.

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    The hospital stay

    Admission to hospital is the day of surgery. The length of stay is usually 3-5 days. We recommend no visitors other than immediate family for the first 2 days to allow your child time to recuperate and rest.
    During your hospital stay, you will be encouraged to participate in your child's care. This is to ensure that you gain confidence and ease with handling the external fixator. Ward nursing staff and the Limb Reconstruction nurse are available to answer any queries you may have, and discuss ways in which you can manage at home.
    The time spent in the operating suite is generally between 3-4 hrs. One parent is allowed to accompany the child to the induction room, where the anaesthetic is started, and both parents will be invited to the recovery room as your child wakes up. Once the operation has finished, a member of the surgical team will come and speak to the family.

    Return to the ward

    Nursing staff will continually monitor your child through out the hospital stay. They will be assessing vital signs, (heart rate, breathing rate, temperature and blood pressure) and the operated limb.

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    Pain relief

    Treatment with an external fixator will involve some pain and discomfort. For the first days following surgery, pain relief will be given intravenously by either a patient or nurse controlled system (these methods will be explained to you fully by the nursing staff at preadmission and anaethestist). This is then followed by tablets or medicine, which the child will continue to take at home.

    Pain medication is required regularly during early part of the treatment time, however once this is past, many children only require occasional medication.

    Pin site care

    The pin sites are dressed throughout treatment. Dressings will be changed daily for the first three days and then approximately every 7 days. Some children find the cleaning of the pin sites uncomfortable to begin with, but this usually settles. We have strong support networks for children who find this difficult, from the Play Therapist on the ward, to Comfort Kids in the Outpatient phase should this be needed.

     All parents (and older children) are given the opportunity to learn to perform the dressings. Children are reviewed as an outpatient regularly and any porblematic pin sites dressings will be done with these visits. Routine pin site care is not done at these visits.  

    All children are referred to our RCH@Home service, who will teach parents and caregivers how to do dressings. This service is provided for up to 4 weekes.

     Be sure that your child does not poke things around the pin sites, or play with them. This can become a focus for infection. The only time that pin sites are to be touched is during the dressing procedure.

     

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    Physiotherapy

    This is a vital part of successful limb reconstruction. The amount of physiotherapy required will be determined on an individual basis. Your child will be seen on the ward the day after surgery, and gentle stretches will be started. The Physiotherapist will need the help and support of the parents from the beginning. This may involve encouragement in the initial phase, and then supervision of exercises as they are carried out at home.
    A lot of children with a fixator are able to walk, and are encouraged to do so. Putting weight through the treated leg can help with bone healing. Walking also helps with independence of the child.

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    Follow up appointments

    You will be seen in orthopaedic out patients the week after your discharge. After this, you will be seen weekly to fortnightly whilst you are correcting your frame, and monthly after this time. Xrays will be done at these appointments.

    Discharge Needs

    Certain equipment may need to be hired from the hospital. This may include: 

    Wheelchair10.00 per week 50.00 deposit
    Walking frame / rollator6.00 per week20.00 deposit
    Crutches6.00 per week20.00 deposit (45.50 + to purchase)
    Portable ramps8.00  per week30.00 deposit
    Commode chair10.00 - 17.00 per week30.00 - 50.00 deposit
    Swivel Overbath seat11.00 per week 50.00 deposit
    Shower chair6.00 30.00 deposit

     

    Dressings

    You will also need to purchase dressing products, so that the pin site dressings can be done at home. The approximate costs of these are $50.00

    These include

    Dressing pack .70 c
    Alcoholic Chlorhexidine 0.5% / 70% - 500 mls5.80
    Handyband bandage - conformable bandage - 5 cm width.85c
    Non-fibrous gauze swab - eg: Soft-wick / Topper 8 / Nu-Gauze.50c
    Alcohol swabs eg: Mediswab, Mediwipe3.30
    +/- Allevyn or Foam like dressing7.25

     

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    Managing at home

    Most children will spend some time in a wheelchair but eventually, we like all children to be up walking. It is important that walking is encouraged once allowed, as this helps the child gain independence, which in turn helps with acceptance of treatment. Once your child can safely use the crutches/frame then the wheelchair should be used only for long distances, or returned.

    In the early stages, the use of interactive toys and frequent scenery changes can help to alleviate boredom. Put some thought into activities that your child can participate in to help pass the time. When visiting new places, it is often useful to do some 'research' into the place you intend to visit. Check that there are facilities for the disabled - wheelchair access is vital if your child is using one.

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    Transport

    Most children are able to travel in the car with some minor adjustments. Many children travel in the front seat of the car with the affected leg elevated on pillows or a small beanbag.  A seat belt or other approved safety restraint must be used at all times. To travel without your child being safely restrained is illegal.  PPT_0003_Layer 1.jpg

    Positioning and lifting

    Correct positioning will be taught by the physiotherapist. This is to prevent the complication of contracture. A contracture is an abnormal shortening of the soft tissues and muscles around the joint. It results in stiffness and deformity. Common sites of contracture are hip, knee, foot and toes.

    Careful positioning, splinting and following your physiotherapy regime can prevent contractures developing. To prevent a foot deformity, always use the splint or sandal provided, particularly when resting in bed. To prevent knee contractures, it is vital that the child does not have a pillow placed under the knee. The use of pillows or a rolled up towel under the ankle will ensure that the knee remains straight.

    Older children with fixators can be very heavy, particularly if both legs are treated. If you have any concerns about lifting your child or about the amount of support you have at home please discuss them with the Physiotherapist and/Occupational Therapist who will be seeing your child on the ward.

     

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    Other handy information

    Disabled Parking Permits

    Ask the Limb Reconstruction nurse for an application form for a temporary Disability Sticker for your car. It can be very difficult getting your child in and out of a car in a confined car space. Your surgeon will sign the medical section of the form, then you must complete the rest and take the form to your local council to have the sticker issued.

    VPTAS Forms

    If you have to travel more than 100kms or 500 kms for 5 weeks or more to the nearest medical or dental specialist from home you may be eligible for travel assistance through the Victorian Patient Transport Assistance scheme. Forms are available from the Limb Reconstruction Nurse, the Care Manager on the ward or from the Social Work department on the 5th Floor of the South East Building. Forms are also available at Department of Human services Regional offices. Your GP and surgeon will need to complete some sections of the form before you can claim

    Internet sites

    There are a number of sites that have information about external fixation devices. Please note that these sites will have some information and practices that vary from ours. This is not to say that some are right and others are wrong, rather, all are different.

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    WHEN TO CALL YOUR DOCTOR

    • If there is an increase in pain of the affected limb.
    • If there is any redness, swelling or tenderness around any of the pin sites.
    • If there is any discharge from the pin sites.
    • If there is a fever that can't be explained by a cold, ear infection or other illness.
    • If there are problems with the fixator, such as broken wires or pressure areas on the skin under the rings.
    Contact names and numbers