Going home
Most children are discharged in the afternoon. Travelling home by public transport should not cause any problems, but if possible, you should arrange for someone to collect you by car.
The hospital provides a parking permit for the day of discharge. However, you are responsible for paying the congestion charge as a refund can be given only in a few circumstances.
Remember that your child will need a car seat or seatbelt as usual, and if your journey is a long one, take frequent rest and snack breaks. A small blanket placed over the chest and under the seatbelt can provide some padding and comfort for the journey home.
Please note that the hospital cannot routinely provide transport home unless there is a medical need, or your child is being transferred to another hospital.
Looking after your child’s wound
The wound should heal in two to three weeks. The stitch (suture) will dissolve under the skin and does not need to be removed.
The chest drain stitches will need to be removed five days after the drains come out. If they have not been removed before your child goes home, you should take them to your family doctor (GP) surgery to have this done. You may also see a fine white stitch outside the wound, which will fall out in a few weeks.
It is important to keep the wound and surrounding skin clean. Your child can have a shallow bath or shower as soon as all the stitches have been removed. The wound should be washed gently with mild unscented soap or diluted baby bubble bath using a soft clean sponge or flannel. Do not soak the wound until all the scabs have gone. Sticky plaster marks are hard to wash off so should be removed with plaster remover, available from ward staff.
If your child has any problems with wound healing or shows any signs of wound infection, it is important that you follow the advice given by your surgical team at GOSH immediately. Please consult your family doctor (GP) as soon as possible and inform staff on Bear Ward or a Cardiac Nurse Practitioner.
Signs to look out for include:
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your child is generally unwell
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they have a high temperature of 38°C or more
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the site is redder than before and the redness has spread around the wound
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the site feels hotter than the surrounding skin
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the site is oozing a clear or creamy fluid
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your child is complaining of pain and the site is sensitive to touch
Please contact us if you see any of the above signs or those listed under 'any concerns' below.
Other concerns
If you see any of the following symptoms, please contact us immediately.
Babies
- increasing breathlessness
- increasing blueness
- poor feeding or sweating when feeding
- poor weight gain
- increased lethargy or irritability
- puffy face or dry nappies
- unexplained fevers
Children
Getting back to normal
It may take a few days to re-establish your and your child’s routine at home.
If you are taking a new baby home, you need to remember that most of your concerns will be those of any new parent and will include worries about feeding, sleep pattern and weight gain. It is normal that you should have additional worries relating to your child’s heart condition. The ward staff will have contacted your health visitor to arrange an early appointment to provide support.
If you have any concerns, your first point of contact should always be your family doctor (GP). However, if you remain concerned, please contact us on one of the numbers below.
If you or your teenager have any questions about recovery, please contact our Cardiac Adolescent & Transition Clinical Nurse Specialist.
Feeding your child after a cardiac operation
We realise that this is one area that causes parents most concern after discharge home, particularly in babies and young children. It is our aim that following surgery, your baby will feed well with a steady weight gain. However, feeding any newborn baby can be challenging and this can be particularly true of babies with congenital heart disease.
You may find your baby is less interested in feeding, feeds slowly or develops symptoms such as sweating or shortness of breath when feeding. Achieving good weight gain can be frustrating, but your health visitor may be able to offer some practical advice and support. It can be helpful to have a weekly weight check at the baby clinic for the first few weeks. If problems persist, your baby may need calorie supplements or a review of their medicines to relieve symptoms. Additional information on feeding is available on request.
If your baby goes home on nasogastric feeding or supplemental feeds, we will give you additional information about these. We will train you how to give nasogastric feeds and establish links with your local team. If your child is on supplemental feeding our dietitians will liaise with your family doctor (GP) to ensure a continued supply of feeds.
Like babies and younger children, it can take older children to return to normal patterns of eating too. A normal healthy diet is enough to encourage weight gain and maintenance for most children.
Giving your child medicines
It is very likely that your child will be discharged on medication. Most children will continue to take medicines until the first outpatient appointment, when you can review them with the doctor.
A member of the ward team will talk to you about the medicines and teach you how to give them before you go home. Remember that written information and audiovisual podcasts on giving medicines are available on our website. Please note that it is safe to give pain relief medicines at the same time as the cardiac medicines.
We will also give you information about the specific medicines your child is prescribed. Please read labels carefully every time you give a dose, but particularly when you get a new supply.
The hospital will give you two weeks’ supply of medicines, but you will then need to ask your family doctor (GP) for a repeat prescription to take to your local pharmacy. Your local pharmacy may not have these medicines in stock, so you will need to get the repeat prescription in plenty of time. The Pharmacy at GOSH can advise your local pharmacy if they are having difficulty ordering the medicines.
Give your child the medicine before feeds or meals unless otherwise stated on the bottle. This is less likely to make your child sick. If your child vomits or spits out the medicine immediately or within minutes of it being given, you may repeat the dose. If your child vomits or spits out the medicine later, do not repeat the dose. Some medicines work very quickly so it is less harmful for your child to miss the odd dose rather than have too much medicine.
Immunisation
Most children with cardiac conditions should be immunised according to the usual schedule. You should discuss the usual schedule for your local area with your health visitor. You can also find information about vaccinations on the NHS Choices website.
However, we recommend that you:
- Wait for one month after discharge before continuing with the immunisation schedule.
- If your child is going to have further surgery, we advise that they should be immunised in the week before admission.
- Seasonal flu vaccination is recommended to all children who have a long term health condition, such as heart or lung disease. Children who have not had a complete repair of their congenital heart defect, or those children who have continued reduced oxygen levels due to their heart condition (cyanotic heart condition), should be vaccinated. However, flu vaccination is not recommended before six months of age or for those with egg allergy. If in doubt, please discuss this with your child's doctor or a member of the Cardiac Liaison Team.
Some children have additional problems affecting the immune system, specifically Di George syndrome. Where this has been diagnosed, your child’s cardiologist and immunologist will advise you how to proceed with immunisations.
Changes in behaviour
Your child may take time to re-adjust to their normal routine after returning home. In particular, they may be more clingy and anxious, have a disturbed sleep pattern or may temporarily regress in their milestones.
You may notice that your child is more demanding of your time and patience at a time when you may feel emotionally and physically exhausted. These changes in behaviour are normal and usually improve within six weeks.
Many parents also report feeling down and/or isolated for the first few days at home. These feelings usually improve fairly quickly but if they carry on, please talk to your family doctor (GP).
Play, sports and school
With toddlers and older children, please try to encourage quiet activities and avoid rough and tumble play. The only activities you should not allow your child to do until the first outpatient appointment, are contact sports, bike riding, climbing and swimming. Resuming normal activity will be discussed on an individual basis at the first outpatient appointment.
Your child should be encouraged to go out, but should avoid large crowds and keep away from anyone who is obviously unwell for a week or two. We would usually recommend that your child stay away from school, nursery or playgroup for two to four weeks.
Your child’s school may be able to send work home so that they do not fall behind. If you need a letter for the school explaining the circumstances of your child's absence, please ask your nurse or Cardiac Nurse Practitioner for one.
Reducing the risk of endocarditis
Many children have an increased risk of infection in their heart. This is called endocarditis and is a rare but potentially serious problem. The most common causes of endocarditis are organisms (bacteria and fungi) that normally exist in our mouths or on our skin, which get into the bloodstream and travel to the heart.
The major risk factor for endocarditis is tooth and gum disease. Therefore, the best way to prevent endocarditis is to avoid tooth and gum disease. Good dental hygiene is important as are regular visits to the dentist. Any tooth or gum disease should be treated promptly. We also advise that piercing and tattooing should be avoided.
Endocarditis in its early stages is similar to having influenza or flu, but it does not go away as quickly. Your child may feel generally unwell, have a high temperature, aches and pains, and sweats. If your child has a high temperature that does not go away in one week, it is very important to contact your family doctor (GP).
In the past, it has been recommended that children are given a dose of antibiotics before dental work, operations, piercing and tattooing. Recent recommendations from the National Institute for Health and Clinical Excellence (NICE) advise that there is no evidence that giving antibiotics in this way prevents endocarditis, but exposes children to the risks of antibiotics.
The only time that they recommend a child has antibiotics is if the child has already had endocarditis, or if there is already an infection present at the time of the procedure, such as a dental abscess.
Follow up after discharge
One of the cardiac nurse practitioners will try to call you within three working days of discharge. If you do not receive a call, please get in touch using one of the numbers at the end of this information sheet.
Most children are seen by the doctor within four weeks of discharge, but if we need to see your child sooner, we will discuss this with you before going home. If not given to you before you go home, the date and time of the outpatient appointment will be posted to your home address. Please confirm that we have up to date contact details before you return home. If you do not receive an outpatient appointment within four weeks of discharge, please contact us.
Other information to discuss with your cardiologist or cardiac nurse practitioner
Before booking a holiday abroad or days out to an amusement park, it is best to check whether it is fine for your child to:
You should also inform your child's travel insurance company about their condition.
