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Going Home

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Going Home: What to Expect

When your child is well enough to go home, you will receive detailed discharge instructions. These instructions will be personalized to your child's needs and will cover a variety of post-operative care issues:

Follow-up appointments — The cardiologist will want to see your child for a post-operative appointment one week after surgery. Before you leave the hospital, however, verify this with your child's team and arrange any follow-up visits.

Your child may be referred to a neurodevelopmental program and a neurologist after discharge for routine evaluation and follow up on their development. This is recommended if your child had open heart surgery and is one month old or younger or had DHCA (Deep Hypothermic Circulatory Arrest) in the operating room or needed ECLS (Extra-Corporeal Life Support) after surgery.

Medications — We will discuss any medications your child may need to take, the dosages, benefits and any potential side effects.

Suture removal — Before you leave, we'll go over the plan for removing chest drain sutures (stitches).

Activity guidelines — While your child continues to heal, you’ll need to make some adjustments in activity. Ask your doctor or nurse if there is anything else your child should or should not do in addition to following these basic guidelines:

If your child had a sternotomy incision (straight down the center of the chest) follow these guidelines for six weeks after surgery:

  • Do not pick up your child under his/her arms
  • Lift your child by scooping under their bottom and behind their back.
  • Make sure your child does NOT skateboard, roughhouse, participate in PE, recess, contact sports or activities that could put pressure on his/her chest or cause a blow to the chest.
  • Do NOT allow your child to carry a full backpack or lift heavy objects (anything over 10 pounds).
  • For older teens — no driving for four to six weeks because of the risk of hitting the chest on the steering wheel.
  • Gentle swimming is ok after three to four weeks — no roughhousing, diving or swim strokes with arms reaching over the head

If your child had surgery through a side incision (thoracotomoy), avoid contact sports or activities that could harm the chest area for two to three weeks. Avoid contact with people who are sick for the first two weeks after you leave the hospital.

Going back to school or daycare — If your child goes to school or daycare, he/she will be ready to go back at least part time a week or two after surgery.

  • Avoid daycare/school with large numbers of children for at least two weeks. This is to prevent your child from getting sick with a viral illness, especially in the winter season.
  • Consider starting with half-days until your child’s normal energy level returns.
  • Make sure school and daycare personnel supervise your child in the classroom and on the playground to enforce activity restrictions for six weeks following surgery.

Wound/incision care — When you leave the hospital, your child’s incision will still be securely closed with dissolvable sutures, with overlying surgical glue. You can help the incision heal properly by following these guidelines:

  • Your child may take a daily shower (Infants may have a daily sponge bath)
  • The surgical glue will peel off on its own in one to two weeks
  • Do not soak the incision in water for two weeks after surgery
  • Do NOT use lotions, oils or creams on your child for three to four weeks
  • Protect your child’s incision while riding in the car by covering the seat belt with clothing or a soft, cloth diaper
  • Keep bibs on babies to help incision stay dry
  • Have your child wear loose, soft clothing
  • For one year following surgery, make sure to protect the incision from sun exposure and use sunscreen

Dental care — If possible, do not make any dental appointments for your child for six months after surgery. Talk to your child's physician before resuming dental care.

Immunizations — In general, your child may resume a normal immunization schedule six to eight weeks after surgery. However, each child is unique. Please discuss specific vaccine recommendations with your cardiologist.

What to Expect After Surgery

The following information will help you be aware of what is normal in the healing process and what, if anything, you can do to help.

Healing incision site — It will take anywhere from six months to one year for the incision site to return to the original skin color. In the meantime, keep the skin protected by avoiding sun exposure and using sunscreen.

Muscle and incision soreness — Your child's doctor may prescribe pain medications. You also can try giving your child age-appropriate doses of Tylenol or ibuprofen. Babies actually may be experiencing gas pain, as opposed to chest pain. Try rocking or walking with your baby to see if this provides relief.

Sleeping difficulty — After surgery, your child's sleep patterns may be disrupted. If your child has been prescribed pain medication, giving it before bedtime may help. Sometimes sleep problems arise from a child's fear. Talk to your child to try to find out whether fear may be a factor here. If it is, do your best to reassure your child that his/her heart is getting stronger and healthier every day.

Loss of appetite — It may take two or three weeks before your child's pre-surgery appetite returns. Keep encouraging your child to eat and drink. Try to entice your child to eat by offering healthy snacks.

Low energy level — Give it time. Within two to four weeks after surgery, you'll most likely see improvement.

Unusual skin sensations at incision — Your child's skin may tingle, itch or even feel numb. These sensations, while annoying, will go away in time. Until then, keep your child's fingernails short and clean to discourage scratching. You can also try placing a cold cloth over the site to relieve itching.

Developmental regression — A child who is potty trained before surgery may have accidents or wet the bed after surgery. A child may go back to sucking his/her thumb or refuse to sleep in his/her own bed. These behaviors are normal and temporary. Encourage a normal routine and gradually these behaviors should reverse themselves.

Constipation — Some pain medications, like Oxycodone or Codeine, can make your child constipated. If your child is constipated, try offering apricot nectar or pear or prune juice.  Your doctor may prescribe a medication such as a laxative for this problem.

Mood swings — Your child may feel sad or mad and have good and bad days. These changes in their mood should go away in time. 

What's Not Normal

While many symptoms and side effects of heart surgery are normal and nothing to be concerned about, others are. Call your child's cardiologist if you notice any of the following:

  • Bleeding
  • Worsening pain, not controlled by medication
  • Fever of 101 degrees Fahrenheit or greater
  • Persistent vomiting or diarrhea
  • Breathing difficulties (breathing harder, faster, new cough)
  • Breast bone popping or clicking
  • Incision is red or swollen, or draining fluid
  • Puffy eyelids, face, hands or feet
  • Dry diapers (no urination)
  • Poor drinking of fluids
  • Increased tiredness, weakness, fatigue or irritability
  • Cool, pale or mottled skin