ADULTS AND PARENTS
Departures

Aftercare and Out-Patients
OK so you are now home. You may have some questions, please don't hesitate to ring us, but have a quick look below to see if we can answer some of your questions.

How long will the scar take to heal?
Many things affect the length of time it takes for a wound to heal.

• Having a well balanced diet will help the process.

• Keeping the wound dry for the first few weeks; there are no objections against a regular bath or shower, although it is advisable not to soak too long in the bath for the first four weeks after surgery.

• Wound healing takes place during rest or sleep, so ensure your child gets enough rest.

• Protect the wound from damage, i.e. knocking the wound.

• Try not to poke the wound, you may cause infection.

• Do not use any dressings, creams, talc etc on the wound unless advised by your nurse or doctor

• Try not to expose the wound to direct sunlight without protection. The wound is prone to sun burn, so keep it covered, or apply total sun block (make sure the skin is not broken before applying sun block)

Our surgeons use dissolvable stitches. This means there are only usually one or two stitches that need to be removed, several days after your operation.

It is quite normal to see small lengths of stitch come away from the wound. Remember that the deep stitches in the heart and chest wall are firm and secure and not affected by the changes you see around the skin.

Check the wound regularly and if your child experiences any pain, or you notice any swelling or redness, this may be a sign of infection. If you are worried or your child has any of these symptoms, please see your GP for advice. If you have any further questions about your wound, ask your nurse before you go home or contact the specialist nurse.

Will the scar fade?
Most scars fade to a fine line, over a period of time but this may take several months. Once the wound has healed and if your child wishes to make it less noticeable, a skin camouflage service is available at the Hospital. This is run by the British Red Cross, who provide a service by using skin-coloured make-up to cover the scar. Creams are available on prescription.

When can my child start exercise again?
During the first 6-8 weeks following surgery, it is important to protect the breastbone by avoiding strenuous activity. However, it is important to keep your child active in the first few weeks after their operation, by gradually increasing the amount of walking they do.

Some children can feel a bit unsure and scared about returning home and doing 'normal' activities. The key to overcoming these worries is by pacing activities to build up strength and confidence step by step. Rushing into activity may tire your child quickly and then make your child think that they can't do things. Equally, avoiding activity will only decrease fitness and increase worries. Try to strike a balance between the two.

Physical sports such as football, netball etc can be recommenced once the breastbone has healed which usually takes 6-8 weeks. Swimming can be recommenced at 4 weeks if the skin wound is completely healed. Very few children need to limit the amount they do, but your child's Consultant will tell you of any necessary restrictions.

When can my child go back to nursery/school?
If your child is at nursery or school, we recommend they take 4 weeks off following discharge, which usually takes you to your first outpatients' appointment.

Can my child have routine vaccinations?
Unless there is a specific reason, we strongly advise that routine vaccination programmes are continued. However, allow 1 month after surgery before having any vaccinations.

When will my child see the Doctor again after discharge?
Following discharge your child will be followed up in the Out-patient Department. The Cardiologist will see your child, either here at Leeds General Infirmary or at your local hospital. If you do not receive an appointment within a week or so after discharge give the ward a ring to check what is happening.

General health advice

Diet
Generally children with heart problems do not have to follow a special diet and like all children should eat well balanced meals including plenty of fruit and vegetables.

Healthy eating helps reduce the risk of developing many conditions such as cancer, constipation, obesity and tooth decay. Eating a good variety and balance of foods and taking regular exercise gives your child the best chance of being fitter and healthier.

Babies will only be discharged from hospital once feeding has been established. Your child's health visitor will be informed on discharge and will continue to monitor your baby's progress once you are home. Occasionally babies need calorie supplements added to their milk, if this is needed you will be shown how to add these to feeds and be provided with a supply to take home. Further supplies would be available on prescription.

The hospital dietician or practice nurse, based at your local surgery, are available to give advice.

Medicines
If your child is taking medication they will be provided for you to take home. You will be given one week's supply so it is important that you do not run out! You will be given a letter for your GP, which provides information about any prescriptions that need renewing.

Before you go home you should know

- What the medication is called, and what it is for.
- How often you need to give the medication
- Keep taking the medication until you have been seen in the Outpatients Department

-if you are unsure, or just need to double check we would rather you rang us to check things out.

Will my child be in pain when we go home?
No!

Your child may suffer mild discomfort whilst moving around for a few days. Paracetamol can be taken for this. So make sure you have some at home as this is not usually provided by the hospital.

For the first few nights at home, you may find it helpful to give Paracetamol before they go to bed - follow the instructions on the pack. This may ease any discomfort causing difficulty in sleeping.

You may find that their sleep patterns change for a while after you leave hospital. This is normal and can be due to changes in your usual routine and the effects of sedating medications. The key to sleeping better, is to get back into a normal bedtime routine once at home. Try not to worry, because the more worrying you do the harder it will be to sleep. Listening to relaxing music or reading to them my help. Most of all be patient with your child and allow them to adjust and recover from the operation.

Endocarditis and Antibiotic Prophylaxis

Because you have a heart condition, you may be at increased risk developing a serious condition called ENDOCARDITIS.  Some heart conditions only carry a low risk of contracting endocarditis.

Endocarditis is an illness in which infection develops on the heart valves or other heart tissues.  This infection is extremely difficult to cure.  It usually requires at least six weeks in hospital, being treated with antibiotics given via a drip.  Patients who develop endocarditis can become extremely unwell, sometimes require heart surgery to cure the problem, and sometimes even die. 

Dental Health
The most common source of the bugs which cause endocarditis is from the mouth.  Everyones’ mouth carries bugs but if your teeth and gums are in poor condition the risk is increased.  When you have dental work performed, if any bleeding occurs bugs from the mouth can enter the blood and make there way to the heart.
We therefore recommend;
1. You brush your teeth thoroughly twice daily
2. You see your dentist every 6 – 12 months
3. You NO LONGER need to take antibiotics prior to any dental work even if you have had endocarditis in the past.

If you have trouble finding a dentist, your local Health Authority can help you to find one. Have a look in the phone book or email your specialist nurse here.

Other procedures
There are other procedures which also carry a risk of allowing bugs into the blood stream and you should therefore have antibiotic cover for these too.  These include certain operations and procedures (particularly those which involve the bowels or bladder or genital tract).  If you come to hospital for any tests or operations, you should tell the medical and nursing staff looking after you that you have a heart condition and may need antibiotics.  They will then be able to advise you whether it is necessary for that particular procedure.

Why do I no longer need to take antibiotic cover for dental work? 
New guidelines regarding antibiotic cover were published by NICE on March 17th 2008.  These state that the risks associated with taking antibiotic cover for dental work outweight the benefits you can expect to gain.  You should continue to take good care of your teeth, and be aware of the symptoms of endocarditis so you can spot it early.

Please click here to download the advice published by NICE for patients.

Useful contact numbers

Ward 10 - Tel. 0113 - 392 7110

Specialist nurses - 0113 - 392 5467 - please leave a message on the answer machine if not available.

Our specialist nurses can help with more information about your child’s heart condition - we can provide written details and diagrams or can arrange to meet with you personally to discuss this.

We can talk to others looking after you and your family
If you have local health professionals, such as Health Visitors, School Nurses, Community Nurses or family doctors, involved in the care of your child, we would be happy to provide them with information about your child’s heart condition and related issues.

How much can my child do?
Some parents need advice about appropriate levels of activity for their child. Please contact us if you would like to discuss this further.

Need to ask the Doctor something?
If there are any issues about your child’s heart condition, or care, which you are not sure about we could discuss these with your Consultant on your behalf.

Health Visitor/ School Nurses
We can provide information for Health Visitors and School Nurses regarding general health issues which may be influenced by your child’s heart condition. E.g. immunisations, feeding, weaning.

Others that can help
We can put you in touch with other agencies:

- Social Workers – who can offer advice regarding benefits which may be available to families of children with heart conditions.
- Dieticians – who can advise about feeding issues.
- Support Groups – there are specialist support groups for families of children with heart conditions.

Support
There may be times when you feel that you would like to talk to someone outside of the family. Please contact us and we can arrange to meet up, either at your home or at the hospital.

School/Nursery asking questions?
If your child’s school is asking for advice regarding their heart condition, please contact us as we can provide written information or even visit the school, if more appropriate.Ring the specialist nurses on 0113 392 5467

Updated Winter 08/09