After heart surgery: Caring for your child

When your child goes home: What to expect

Before leaving the hospital, you will receive an After Visit Summary. This includes:

• a summary of your child’s hospital stay
• details for follow-up appointments
• any special care instructions (for example, incision care, medications and nutrition)

Keep this summary somewhere visible (for example, near your child’s medication or care supplies).

How to care for your child’s incision

Your child will have a main incision (surgical cut) in the middle or the side of their chest and may also have smaller incisions where tubes or wires were inserted. Teenagers may have a second surgical incision on their groin. Your child’s main incision on the chest may have a clear tape like dressing (e.g., Prineo) and blue stitches. These will be removed by the health-care team 14 days after surgery. These areas need to be checked every day for signs of infection.

What to check daily

Look for:

• fever
• redness
• swelling
• drainage
• increasing pain

Tip: You can take photos every day of the incision to monitor the healing process.

If you notice any of these, contact your child’s health-care provider. For patients who had surgery at SickKids please see the “At SickKids” section at the end of this handout.

Dressing/incision care (first 2 days after surgery)

This care should be done daily.

1. Wash your hands.
2. Remove the old gauze and blue tape (can use an adhesive remover on the tape if needed).
3. Wash your hands again.
4. Place a new clean gauze dressing over the entire incision.

If the gauze becomes soiled (for example, with vomit or milk/formula)

1. Wash your hands.
2. Remove the dressing.
3. Wash your hands again.
4. Clean over the incision (including over the Prineo dressing) with mild soap and water.
5. Rinse with clean water.
6. Pat dry and place a new clean gauze over the entire incision.

Beginning day 3 and until scabs fall off

This care should be done daily.

1. Wash your hands.
2. Remove the dressing if still being used.
3. Wash your hands again.
4. Clean over the incision (including on top of the Prineo dressing) with a soft washcloth, water and unscented liquid baby soap. Clean the incision from top to bottom. Then wash the area surrounding the incision on both sides.
5. Rinse the soap off using clean tap water.
6. Pat the area dry using a clean towel or washcloth.
7. Gauze dressing is no longer required (unless still in hospital). Note: If your child has frequent spit-ups, vomiting or is picking at the dressing, you can continue to use an external gauze dressing (after the first two days).
8. Cover the incision with clean loose clothing and use a bib when feeding babies and toddlers.
9. If the incision gets soiled or dirty, clean it again to prevent infection.

Bathing and showering

This care should be done daily.

• Babies should be sponge bathed or have a shallow bath.
• Older children should shower with the incision facing away from the shower head/stream. Allow soapy water and then clean water to run over the incision.

Avoid the following

• Scrubbing the incision or picking at scabs as this disrupts the healing process (instead wash gently).
• Soaking the incision during showers for long periods of time.
• Do not submerge the incision in water (e.g., bathtub, pool, etc.) for at least four weeks and until all the scabs are gone.

Chest tube site care

• Remove the bandage two days after the chest tube is removed.
• Clean daily with soap and water until the scabs fall off. Avoid covering it with bandages or gauze.
• The black stitch will be removed before your child is discharged or at your child’s post-operative clinic appointment.

Protecting skin and scar healing

Sun protection

• Cover the incision with clothing that does not let light through until scabs are gone.
• Once the incision is fully healed, apply sunscreen to the new scars whenever the skin is exposed, as this skin is more sensitive.

Scar massage (after incision heals and scabs are gone)

Scar massage helps improve healing and appearance when done regularly during the first year after surgery.

• Use an unscented cream or lotion (look for “water” or “aqua” as the first ingredient).
• Using mild pressure, gently massage along and across the scar until the scar turns pale or white (“blanching”).
• Massage for 3 to 5 minutes, 3 times a day (if the area is sensitive, start with a shorter time).
• If the scar appears elevated, consult your health-care provider.

Encourage activity and movement

Movement helps recovery, encourage:

• sitting up for babies or holding them
• walking
• breathing exercises
• blowing bubbles (young children)
• incentive spirometer (older children)
• splinted coughing (done by hugging a pillow while coughing)

Activity guidelines post-sternotomy: Incision at the centre of the chest

Activity guidelines post-thoracotomy: Incision on the side of the chest

*NOTE: For minimally invasive thoracotomy incisions (toddlers and older children), there are no activity restrictions. They can do any activity as long as they are not in pain doing so.

Managing pain

our child may experience discomfort for several weeks. This pain should gradually improve.

• Give pain medication as prescribed. As your child heals, they will need to take this medication less often.
• If the pain changes, is not relieved by over-the-counter medications (i.e. Tylenol or Advil), feels "shooting", "electric" or "radiating" and/or worsens instead of improves with time, contact your child’s health-care team. For patients who had surgery at SickKids, please see the “At SickKids” section at the end of this handout.

Before leaving the hospital, ask your nurse how to recognize when your child is in pain.

Medications

If your child needs medication at home, you will be given a prescription before you leave the hospital. Filling the prescription at the hospital outpatient pharmacy is recommended, as your local pharmacy may not carry all the medications your child needs. At SickKids, there is a Shoppers Drug Mart on the main floor so that you can pick up your child’s medications before you go home.

• Give medications at the same time every day.
• If your child is taking several medications or has frequent doses, ask a pharmacist to help you make a schedule that works best for you — dose times can sometimes be adjusted.
• Try to give medication before feeding your child. Babies are more likely to take their medication when they are hungry and are less likely to throw up if their stomachs are not full.
• Avoid adding medication to food or drinks. When mixed in feeds, babies may start refusing feeds if they associate the medication taste with eating.
• Check with your child’s health-care provider or pharmacist before you give any over-the-counter medications.
• Use a separate syringe for each medication. Do not mix different medications in the same syringe.
• Clean oral syringes, spoons or medicine cups with hot water and soap after each use, then let them air dry.
• Read the written information about your child’s medication before you leave the hospital.
• Always read the labels on medications from the pharmacy to confirm when and how much to give.
• Bring all your child’s medications with you to each visit to the hospital or take pictures of the medication bottles on your phone.

Giving and storing medications

• Some medications need to be kept in the refrigerator — check the labels and expiry dates and store them correctly.
• Keep all medications locked away and out of the reach of children at all times.

If your child vomits after a dose

• Large amount of vomit within 20 minutes of giving a dose: give another dose.
• Small amount of vomit or more than 20 minutes after giving a dose: do not repeat the dose.

If your child misses a dose

• If you are less than 2 hours late giving the dose: give the missed dose.
• If you are more than 2 hours late: skip the missed dose and resume regular schedule.
• If you are not sure what to do, call your child’s health-care provider or pharmacist.

Behaviour and emotional changes

Temporary behaviour changes are common after surgery:

• trouble sleeping
• bed wetting
• increased clinginess or fussiness

These changes should improve as your child settles back into their routine. It is important to support and reassure your child during this adjustment period and talk to your primary care provider if you need support.

Daily routines at home

Feeding and nutrition

If your baby or child has special nutrition or feeding needs (including tube feeding), you will receive additional information and education from a nurse, dietitian and/or an occupational therapist before going home.

Car seat and travel

• Use your child’s regular car seat or seatbelt. No modifications are needed.
• If you live out of town, you may need to stay close to the hospital until your child has had their first follow-up visit.
• Talk to your child’s cardiologist about upcoming travel plans.

Dental care, surgery and other procedures

• Ask your child’s cardiologist if your child needs to take special precautions before any dental treatment, surgery or other procedures.
• If your child requires special precautions, make sure all health-care providers know that your child has had heart surgery before the procedure.

Immunizations

• Some children may need to delay certain immunizations (vaccines) after heart surgery, especially if they received blood products.
• If this applies to your child, it will be noted on their After Visit Summary.
• If you have questions about your child’s immunizations, talk to your primary care provider. For more information, refer to the Canadian Immunization Guide.

Learning first aid and CPR

• Taking a CPR course is highly recommended for parents and caregivers.
• These skills can help you act quickly and confidently in an emergency and may even save your child’s life or someone else’s.
• You can find classes offered in your community or through SickKids.
• SickKids offers both in-person and virtual CPR courses for families. To learn more or to register, visit: https://www.sickkids.ca/en/learning/patient-family-education/cpr-resuscitation-training-families.

Returning to school or daycare

• Babies and toddlers may go back to daycare two weeks after surgery.
• School-age children and teens may go back to school two weeks after surgery or sooner if feeling well.
• Discuss your child’s surgery with the daycare or school in preparation for their return.

Sickness and infection

If other children at the daycare or school are sick or have an infection, your child should not go back until four weeks after the surgery. Good hand washing and avoiding contact with others who are sick can stop the spread of infection.

Follow-up appointments

Cardiology Post Op Clinic

Your child will have a follow-up appointment about two weeks after surgery.

During this visit, your child may:

• have their incision checked by the Nurse Practitioner (NP), and have Prineo and/or suture(s) removal if applicable
• have a chest X-ray, echocardiogram (heart ultrasound), electrocardiogram (ECG) or blood work
• see the dietitian or occupational therapist

Please arrive on time for your appointments. Before each visit write down any questions you have and bring them to the clinic. If you cannot come to an appointment, call the cardiology clinic as early as possible to reschedule. Bring books, toys, snacks and diapers as waits are possible.

Tip: You can give your child a dose of acetaminophen (e.g., Tylenol) before the appointment if stitches are being removed.

Routine health care

• Your child should see their primary care provider within one to two weeks after they leave the hospital.
• They will follow your child’s ongoing general health needs.
• If you have any general concerns about your child’s health, speak to their primary care provider.

When to seek medical help

When to contact your child’s heart-care team

• Concerns for wound infection. Watch for fever, redness, swelling, warmth, drainage or new/worsening pain at the incision site.
• Some children may develop an inflammation reaction called post-pericardiotomy syndrome within the first two months after surgery. Watch for fever, irritability, decreased appetite or poor feeding, vomiting/nausea, chest or belly pain or if your child seems unwell.

If these symptoms appear, contact your child’s health-care team. For patients who had surgery at SickKids please see the “At SickKids” section at the end of this handout.

Call 911 or go to the nearest Emergency Department if your child:

• has trouble breathing
• has a seizure
• is difficult to wake up or is not responding normally
• has a colour change to face, lips, and/or body (blue, purple or grey)

General health concerns

If you have any questions or concerns about your child’s health that are not related to your child’s heart problem or surgery, for example, cough and cold symptoms, contact your child’s primary care provider.

At SickKids

Heart related concerns

• Before your first clinic appointment and up to two weeks after surgery:
• Call 4D Cardiology Inpatient Unit at 416-813-6901.
• After post-op clinic or after one week post discharge (if long hospital stay):
• Contact your clinic nurse directly or call the 4A Cardiology Clinic at 416-813-5848 during business hours. You may leave a message after hours.
• For patients followed by other institutions such as McMaster (Hamilton), CHEO (Ottawa) or LHSC (London), please contact your primary Cardiology team through your usual communication channels.
• For any concerns about the incision:
  Non-urgent:
  • Email a photo of the incision to: cvs.wounds@sickkids.ca (this inbox is monitored Monday to Friday, 8 a.m. to 4 p.m.)
  Urgent:
• During weekdays (Monday to Friday from 8 a.m. to 4 p.m.)
• Call 416-813-6901 and ask for the Surgical Nurse Practitioner to be paged
• After hours or on weekends
• Call 416-813-7500 and ask for the Cardiovascular Surgery Fellow on call to be paged

General health concerns (non-heart related)

Please contact your child's primary care provider (family doctor, pediatrician or nurse practitioner).