Download Your Childs Heart Surgery

Your Child’s Heart Surgery
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Your Child's Heart Surgery
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Your Child's Heart Surgery
Personal Information
Your child’s Mayo Clinic number: ______________________________________
Your pager or cell phone number: _____________________________________
Resource
Name
Phone
Cardiac surgeon
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Pediatric cardiologist
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Physician’s assistant/
Nurse practitioner
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Primary nurse ____________________
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Clinical nurse specialist ____________________
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Nursing unit
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Social worker
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Child life specialist
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Dietitian
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Pharmacist
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Chaplain
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Your Child's Heart Surgery
Other caregivers
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Insurance company
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Family members ____________________
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Local health care providers
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Emergency contacts
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Home care agency
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Flight information
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Hotel information _____________________
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Local resources
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Other contacts
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Your Child's Heart Surgery
Table of Contents
Introduction.........................................................................................................................5
Topics to discuss before surgery...........................................................................5
Helping answer your child’s questions................................................................5
Travel and accommodations..................................................................................7
Cost............................................................................................................................7
Preparing for Surgery.........................................................................................................9
What your child should bring to the hospital.....................................................9
Keeping in touch with family and friends...........................................................9
The day before surgery...........................................................................................9
Checklist for the day before surgery...................................................................10
Arriving at the hospital.........................................................................................11
The heart surgery team.........................................................................................12
Surgery................................................................................................................................15
Possible complications..........................................................................................16
Following Surgery: The Intensive Care Unit (ICU)..................................................17
Creating a familiar environment.........................................................................18
Pain management..................................................................................................19
Daily rounds...........................................................................................................20
Getting Better: The Progressive Care Unit (PCU)......................................................21
Incision care............................................................................................................23
Eating.......................................................................................................................24
Emotional issues.....................................................................................................25
Going Home.......................................................................................................................27
Exercise and restrictions.......................................................................................29
Preventing infections.............................................................................................31
Infective endocarditis............................................................................................31
Immunizations........................................................................................................33
Day care, school and other activities..................................................................34
Medications........................................................................................................................35
Diuretic medications.............................................................................................35
Antiarrhythmic medications................................................................................36
Other heart medications.......................................................................................36
Medications that reduce the risk of forming blood clots.................................37
Appendix A: How the Heart Works..............................................................................39
Normal heart..........................................................................................................41
Abnormal heart......................................................................................................42
Appendix B: Dismissal Checklist..................................................................................43
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Your Child's Heart Surgery
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Your Child's Heart Surgery
Introduction
You’ve been told your child needs heart surgery. You probably have many
questions about heart surgery: What is it? How will it affect my child? How
will my child recover?
Your child’s heart surgery team evaluates your child’s medical needs, talks about
your concerns and questions regarding heart surgery, and determines if your child
may benefit from heart surgery. Heart surgery may allow your child to feel better,
be more active and enjoy a better quality of life.
This booklet provides information about what typically happens during the
surgical process. If you have questions or concerns, talk with a member of
your child’s heart surgery team.
Topics to
talk about
before heart
surgery
Before your child’s surgery, review written materials given to you and talk about
the following topics with a member of your heart surgery team:
• Reasons for the surgery
• Risks of your child’s surgery
• Advance directives
• What typically happens while preparing for surgery
• Your child’s medications –which ones your child should and should not take
before surgery.
• Any allergies or other reactions to medications your child has
• When does your child go to the hospital
• What typically happens during surgery
• What you and your child can expect after surgery in the hospital and when you
return home
• How long will your child be in the hospital
• Any other concerns related to your child’s heart surgery
Helping
answer
your child’s
questions
If your child is old enough to understand what is happening, he or she may have
questions. Here are some commonly asked questions and sample answers:
Will you be with me? Where will you be?
I will always be with you or nearby in case you need me. I may not be able to
come into the operating room with you, but your doctors and nurses will be with
you. I will be waiting close by and I will be with you when you wake up and
throughout your recovery.
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Does the operation hurt?
During the operation to fix your heart, you get special medicine called anesthesia.
Anesthesia makes you sleep so you won’t feel anything during the operation.
When the operation is over, you wake up. You may feel sore and uncomfortable;
tell the nurses or me how you are feeing so you can get medicine to make you feel
better or to make you more comfortable.
Will I be awake or remember any part of the surgery?
Anesthesia allows you to keep sleeping throughout the operation. This is a
different kind of sleep. Usually, when you sleep you may wake up because of a
loud noise or a thunderstorm, but during the operation you will keep on sleeping
until it is over and your doctor wants you to wake up.
How will I get the medicine to make me sleepy?
There are several ways to get the anesthesia. You may breathe into a mask scented
with a flavor, such as bubble gum or root beer, or you may have an IV placed into
your vein. The IV delivers anesthesia to your body through a small tube under
your skin. You will talk about what is best for you with your anesthesiologist
before the operation.
Could I die?
Even with the simplest surgery, there is a very small chance of dying; however,
this surgery is the best chance for a longer, healthier life for you.
Will I be the same person after the operation?
Yes, you will be the same person! After you leave the hospital, you may begin
to feel stronger and healthier because your heart will work better and give you
more energy.
When will I be able to eat?
Members of your health care team will let you know when you can drink and eat.
You will begin slowly to be sure your stomach is awake and can digest your food.
Is it okay to be afraid?
Yes, it is okay to be afraid. Do you want to talk about what you are afraid of? I
can help you understand what is making you feel afraid, and so can your doctors,
nurses, and other health care professionals. (When children are afraid, they need
simple, truthful information and love and support to reassure them.) There are
people on your health care team specially trained to help you understand each part
of your procedure and recovery. Feel free to ask questions or you can ask me and
I’ll ask the questions for you.
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Travel and
accommodations
You will need to arrange how to get to Mayo Clinic and where you will stay.
Many airlines offer charity flights for children in need of heart surgery. There are
many accommodation options available to you and your family members. Talk to
the medical social worker on your child’s heart surgery team if you need help with
accommodations, such as the Ronald McDonald House, or have questions about
travel arrangements. You can also ask the medical social worker about available
support groups to help you, your child and your family during the surgical
process.
Cost
Heart surgery is expensive. A child who is a dependent of someone who has paid
into Social Security may be eligible for Medicare insurance, regardless of age. Most
health insurance policies help with the cost. Medical assistance and state programs
may also help with costs associated with heart surgery. Talk with the medical
social worker on your child’s heart surgery team about any financial concerns you
have or ask about resources available to help you.
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Preparing For Heart Surgery
What your
child should
bring to the
hospital
You and your family must plan ahead of time by arranging transportation,
childcare for your other children, and pre-packing to simplify the process.
Bring the following to the hospital:
• Clothes that fit loosely around the body, such as jogging suits and sleepwear. These types of clothing are more comfortable after surgery.
• Your child’s special comfort items, such as a blanket, pacifier, stuffed animal
or photographs. It is also helpful to bring relaxation aids for your child and
yourself such as CDs, magazines, books, etc.
• Your child’s current medications and any medications you need for yourself. Include a list of medications your child is taking (name, dosage, number of times
per day) and the reason for taking them.
• Eyeglasses (if your child needs them)
• Personal hygiene products (comb, toothbrush)
You may bring your cell phone with you to the hospital, but it must be turned off
while in the intensive care unit (ICU) and the progressive care unit (PCU). Ask
your nurse where cell phones can be used. You are welcome to bring your camera
and personal laptop to use in your child’s hospital room throughout your stay. It is
also advised to bring money for food since it could be a long day for you and your
family members.
Keeping in
touch with
family and
friends
Mayo Clinic offers a free Web service for patients and their family and friends.
CarePages™ gives you the ability to keep in touch with loved ones who are unable
to be at the hospital. You can create your own Web page where family and friends
can check in to see how your child is doing. You and your child can also receive
messages from family and friends. Your page is private and password protected
and is not available for the general public to view. Ask your child’s heart surgery
team for more information about CarePages™ and how to set up your own page.
The day
before
surgery
This is usually a very long day because your child will have many appointments
and see many members of the surgical team. Your child is usually scheduled for
tests first. These tests may include blood work, a recording of your child’s heart
rhythm (electrocardiogram, ECG), an X-ray of your child’s chest and possibly
cardiac catherization. Your child may also have an echocardiogram (Echo), which
uses sound waves to show images of the heart in motion to help see muscle and
valve abnormalities.
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After the tests, you will meet with the pediatric cardiac surgeon and physician’s
assistant/nurse practitioner to review test results. A nurse from the ICU may
take you on a tour of the hospital unit and answer any questions you may have.
Medical social services and child life specialists may also meet with you.
Your child may eat or drink anything until midnight on the day before the surgery.
Then he or she should not have any food after midnight. Your child may drink
clear liquids, such as water or apple juice, until two hours before the procedure.
Your child should not take any medications on the morning of surgery unless
instructed to do so by a member of the heart surgery team. You will be given
special soap and instructed to have your child bathe with the soap during the
evening on the day before surgery and again on the morning of surgery before
arriving at the hospital. Most children will be asked to focus especially on the area
in front, from the chin down to the knees.
Checklist
for the
day before
surgery
• Typical tests that may need to be completed
o Blood work
o ECG
o Chest X-ray
o Echocardiogram and/or cardiac catherization
• Meeting with team members
o Pediatric cardiologist
o Pediatric cardiac surgeon
o Cardiac physician assistant/nurse practitioner
o Medical social services
o Child life
• Tour of intensive care unit (ICU) with a nurse
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Arriving at
the hospital
To be admitted, come to the Admissions Desk at Saint Marys Hospital. Identify
your child as a heart surgery patient (Figure 1). You and your child will be escorted
to your child’s hospital room where a member of the health care team will ask your
child to change into a hospital gown. You will then await further instructions from
members of the heart surgery team.
Figure 1. Arriving at the hospital
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The heart
surgery
team
Successful surgery requires a team effort. Many people make up your child’s heart
surgery team.
• The family is an important member of the heart surgery team. Families are
experts on their children’s usual behaviors and reactions. The heart surgery
team relies on family members for accurate health histories. You are asked to
make your expectations clear and to share your observations of responses to
treatment.
• A cardiac surgeon performs your child’s heart surgery. The surgeon and a team
of other doctors (fellows, residents), physician assistants, extenders and nurse
practitioners oversee your child’s medical care throughout the hospital stay.
• Physician assistants/nurse practitioners will visit with you and your child
before surgery, explain the procedure involved with preparing for surgery, and
participate in your child’s care as part of the heart surgery team.
• A cardiovascular anesthesiologist will care for your child with the staff surgeon
and resident while your child is in the intensive care unit.
• A pediatric cardiologist will follow your child’s progress after surgery,
consulting with the surgeon concerning any changes in medical therapy.
• Infectious disease physicians may be asked to review test results and
recommend medication to treat and prevent infection.
• Primary and unit nurses will take care of your child throughout his or her stay.
Your child’s primary nurse may contact you before surgery to introduce him/
herself and answer any questions you may have. The primary nurse will assign
a small core group of other nurses to care for your child. You and your child
will get to know the nurses very well. The nurses monitor your child’s condition
and provide daily care during hospitalization. They educate you, your child and
your family about care following surgery.
• A nurse communicator is typically assigned to help communicate information
about your child’s surgery. He or she may call you throughout your child’s
surgery to keep you informed about what is happening to your child.
• Physical therapists help design, monitor and assist with a rehabilitative exercise
program for your child if needed during hospitalization. They may be asked to
help with special needs if your child has pre-existing physical limitations or if
the hospital stay is longer than is typical.
• Clinical nurse specialists (C.N.S.) are registered nurses with additional
specialized education in nursing. They serve as resources for your child, your
family, nurses, and other members of your child’s surgery team.
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• Child life specialists use planned and spontaneous activities to help your child
and your family adjust to and prepare for the hospital experiences. Child life staff
members supervise play/recreational activities and provide appropriate toys and
games in play spaces and in patient hospital rooms for children and teens. Child
life specialists are concerned about your child’s growth and development and
social and emotional adjustment to hospitalization.
• Medical social services staff supports your child and your family before
and after the surgery. Medical social services can help with travel and hotel
arrangements and refer you to community resources that address health
education and support needs, financial resources and other discharge needs.
These needs may include resources, equipment, supplies, and assistance with
returning to school.
• Chaplains identify and support the spiritual, religious and emotional needs of
heart surgery patients and their families.
• Pharmacists and the pharmacy staff prepare medications. Pharmacists help
determine the most appropriate medication therapy.
• A pediatric dietitian works with heath care providers to assess your child’s
nutritional status and makes recommendations for a low-sodium, well-balanced
diet, accommodating any specific needs, likes and dislikes.
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Surgery
About an hour before surgery, your child may receive some medicine to make him
or her sleepy. You can be with your child as he or she is transferred to a cart and
taken to the entrance of the operating room (OR) area where you will meet some
members of your child’s surgical and anesthesia team. You may or may not be
able to come into the operating room with your child. Sometimes one parent is
allowed in for a few minutes to provide comfort; however, if you are allowed in
the operating room you will most likely be asked to leave before your child falls
asleep. Be sure to discuss this with your anesthesia care team. After your child is
in the operating room, you will be escorted back to the intensive care waiting area
where you will wait while your child is in surgery.
You will be asked to sign in and out at the nursing station if you go for a walk or
take a coffee break. This way, the nursing staff and nurse communicator know
how to contact you if necessary.
Your child is covered with a warm blanket in the operating room, transferred to
another bed, and a safety belt is fastened around him or her. A pulse oximeter,
a wire with a red light on it, is taped to your child’s finger to monitor his or her
oxygen level. Anesthesia (medication to help your child sleep) is given through
a mask or through an IV and sterile cloths are draped over your child.
After your child is asleep, an endotracheal tube (ET), or breathing tube, is inserted
through your child’s mouth. The ET helps your child breathe while anesthesia is
given, allows secretions to be cleared from your child’s lungs, and decreases the
heart’s workload. The ET is connected to a breathing machine. This machine takes
over for your child because he or she is too sleepy to breathe on his or her own due
to the anesthesia. A catheter is inserted into his or her bladder to drain urine.
Typically, a cardiac surgeon makes incisions either at the center of the chest
(sternotomy) or between the ribs (thoracotomy).
During surgery, your child may be on a heart-lung bypass machine. This machine
takes over for your child’s heart and lungs, circulating oxygenated blood to the
body during the operation.
Narrow drainage tubes (chest tubes) are inserted near your child’s incision to drain
excess blood and fluids from the heart and lung area into a special container beside
the bed.
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Wires are inserted on the surface of your child’s heart. These wires may be
connected to a temporary pacemaker if it is needed. The pacemaker can be used
to control heart rate after surgery. These wires are easily removed a few days
following surgery.
Heart surgery team members continuously monitor your child’s vital signs
(temperature, pulse, blood pressure, respiration). An operating room nurse
(communicator) updates you and your family while your child is in surgery.
How long the surgery lasts varies depending on the type of surgery and the person.
When the surgery is over, the surgeon will call the intensive care unit and your
primary nurse will bring you back to the operating room area where the surgeon
will talk to you and answer any questions you may have.
Possible
complications
As with any surgery, complications can occur. Some risks of heart surgery include:
• Anesthesia problems
• Bleeding
• Infection
• Breathing problems
• Injury to nerves
• Kidney failure
• Heart attack or stroke
• Heart rhythm problem
• Death
Risks are different for each child. Talk with your surgeon about your child’s risks
related to heart surgery.
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Following Surgery:
The Intensive Care Unit (ICU)
When the operation is completed, your child is moved to the intensive care unit
(ICU). It takes about an hour to connect everything needed to monitor your child’s
vital signs. A nurse watches your child very closely. There may be two nurses in
the room caring for your child. Once your child is settled in the room, you will be
able to see him or her.
The ICU room has special monitors and machines used to evaluate your child after
surgery (Figure 2). A nurse will usually stay at your child’s bedside at all times.
As your child wakes up, he or she becomes aware of the breathing tube. Your
child will need reassurance from you to help make this uncomfortable experience
easier. Members of your heart surgery team will also be available to help reassure
your child and may give medicine to help him or her. The breathing tube stays
in place until your child’s heart surgery team decides it can be removed (usually
24 to 48 hours following surgery). The breathing tube prevents your child from
speaking, eating and drinking. Once the tube is out, your child can speak but may
be hoarse for a few days.
IV pump
Pacemaker
Nasogastric
tube
Monitor
Computer
Ventilator
Urinary
catheter
Endotracheal tube
(breathing tube)
Collection container
Figure 2. Intensive Care Unit (ICU)
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Medicine, blood and nutrition are given through intravenous (IV) lines. Medication
to relieve pain also is given through an IV. This IV is hooked up to a pump beside
your child’s bed. Your child will likely have a type of IV that goes into the upper
chest from a vein on the side of your child’s neck (central line). For others, it may
be placed in a vein in the groin (where the upper leg meets the pelvis). As healing
progresses, the lines and tubes are removed.
You and your family may visit your child in the ICU soon after he or she arrives.
Your child may not remember your visits at first because he or she may be sleepy.
You will be allowed to stay with your child most of the time. One parent may
spend the night in the waiting room, but remember parents need to get rest too.
Making arrangements to sleep somewhere outside the hospital is a good idea. At
times, all visitors may be asked to leave the ICU.
Creating
a familiar
environment
You are encouraged to be a part of your child’s care. You are also encouraged to
ask members of your health care team any questions you may have about your
child’s recovery.
You can prepare your child and make him or her feel more comfortable by making
audio recordings of family, friends, pets, and music or home events. You can
record events as they happen, such as dinner table conversations, or plan them,
such as reading from a favorite storybook. You also can bring CDs of your child’s
favorite music, digital music players (iPOD™, MP3™) or movies (DVD or videos).
Many children are reassured by seeing photographs of family, friends, and pets
taped to their bedside. These items can comfort your child when you’re not there.
Let your child know when you leave and when you will return. Tell your child
the nurses and doctors are doing everything they can to help him or her heal and
go home as soon as possible.
All family members and health care workers should wash their hands before
providing care to your child. People should not visit if they are not feeling well
or if they have a cough or an elevated temperature.
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Pain
management
Most children have some pain or discomfort after surgery. Your child may be
asked to describe his or her pain using a scale that has faces (Figure 3).
0-10 Numeric Pain Intensity Scale (NPIS)
0
1
2
3
4
No
pain
5
6
7
8
9
10
Moderate
Worst
pain possible pain
Faces Pain Scale
Figure 3. Pain Scales
Nurses may monitor your child’s pain and give him or her medicine to lessen pain.
The medicine acts fairly quickly, and pain should lessen. Let your nurses know if
your child is in pain. Let the nurses know how well the pain medicine works for
your child. Your child may still have some discomfort, but the heart surgery team
tries to make your child as comfortable as possible.
Several methods are used for giving pain medication. At first, pain medication
may be given through an IV. After one or two days, pain medication may be given
in liquid or tablet form, if possible.
Encourage your child to try these additional methods to help manage pain.
• Visualize a peaceful scene.
—For example, help your child imagine a peaceful setting such as sitting on
the beach and watching the waves splash up on the shore as the sun sets.
Tell your child to keep the picture in mind as long as possible.
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• Listen to soothing music.
• Practice deep-breathing exercises.
• Keep comfort items in the room (a stuffed animal, a favorite blanket, pictures
of friends, family and pets).
• Read or sing to your child
Daily rounds
Plan to be available in your child’s room early each morning. Your child’s cardiac
surgeon, one of the pediatric cardiologists, and other members of the heart
surgery team may talk with you about your child’s progress once a day, usually
in the morning hours. During these daily rounds, the team reviews your child’s
condition, progress and test results. The team schedules tests, adjusts medications
as needed, and establishes a daily plan. Your child’s nurse or the nurse in charge
attends the daily rounds. The nurse can present you or your child’s concerns or
questions to the heart surgery team if you cannot be there.
Parents are welcomed and encouraged to be actively involved during these
rounds. It’s okay to ask questions and talk to your child’s surgery team about
any concerns you may have. You are an important part of your child’s successful
recovery from surgery. You are part of a team working together to help your
child get better so he or she can go home as quickly as possible.
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Getting Better:
The Progressive Care Unit (PCU)
Once your child’s heart surgery team decides your child is doing well enough, he
or she is moved to the progressive care unit (PCU). This move marks a milestone
in your child’s healing process.
Heart surgery team members may remove most of your child’s tubes and lines in
the ICU before he or she is moved to the PCU. By this time, your child is eating,
drinking and walking. Your child’s heart surgery team encourages him or her
to engage in age-appropriate activities. Your child will move from the ICU to a
private room in the PCU. More visitors may be allowed to visit while in the PCU.
However, people should not visit if they are not feeling well, have a cough, or have
a high temperature. Just as in the ICU, family members and health care workers
should wash their hands before providing care to your child.
During the first days in the PCU, your child may need to wear an oxygen mask
just as in the ICU. The nurse will gradually decrease the amount of oxygen your
child uses based on his or her needs. The moisture from the mask helps keep your
child’s mouth and throat from drying out and helps to keep the lung secretions
loose enough to easily cough out.
Although doctors and nurses watch your child carefully, he or she does not need to
be monitored as closely as in the ICU. Your child’s heart rate and heart rhythm are
displayed on monitors in your child’s room and at the nursing station and they are
recorded every hour. There will not be a nurse continuously in your child’s room,
but the nurse is only a call away. Usually one parent may spend the night
in the room with his or her child.
The cardiac surgeon, the physician assistants and nurse practitioners, cardiologists
and nurses continue to assess your child daily. Your child’s nurse involves you
and your child in planning a schedule for each day. Blood samples may be taken
to monitor your child’s condition. Chest X-rays may also be taken. Several days
after your child is transferred to the PCU, an echocardiogram is done to assess your
child’s heart function and check for excessive fluid around the heart.
Your child may be asked to do shoulder exercises to reduce stiffness due to the
incision. These exercises may be uncomfortable, even painful, and your child
might not want to do them. However, they may help your child recover faster, so
it is important to do them.
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Coughing and breathing exercises may help prevent pneumonia. A heart surgery
team member shows your child how to do them using a device called an
incentive spirometer (Figure 4). Your child may want to hug a pillow tightly
against his or her chest while doing these exercises. Pain medications also are
available.
Figure 4. Using an incentive spirometer
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Nurses and other members of your child’s heart surgery team will encourage your
child to be up and moving as soon as possible. Your child is asked to get out of
bed and walk several times a day. At first, a nurse helps. A child who is steady
enough, may walk with a parent, other family members or friends. Physical
activity is balanced with rest. A physical therapist may help your child exercise
and improve muscle strength. An occupational therapist or child life specialist
usually helps your child resume normal activities.
Incision
care
After heart surgery, your child has an incision line on his or her chest. The
incision must be cared for properly. A nurse cleans your child’s incision at first
and then shows you and your child how to do it.
Hand washing is the single most effective way to prevent infection. You, your
child and your family must wash your hands carefully before doing incision care.
To cleanse your hands with soap and water:
1.Turn on the water and adjust it to a comfortable temperature.
2.Wet your hands and wrists under the running water.
3.Lather your hands, wrists, cuticle area and between your fingers and thumbs
with soap.
4.Clean the area under your nails by bringing your fingers and thumb together.
Press your fingertips into the palm of your other hand and rotate your fingers in
a circle. Follow this process for each hand.
5.Continue to lather for at least 15 seconds. Rubbing your fingers and palms
together will remove germs from your skin.
6.Rinse your hands and wrists under the running water. Angle your hands
downward so soap and soil wash into the sink.
7.Completely dry your hands and wrists with a paper towel or clean hand towel.
8.Turn off the water faucet with a paper towel or hand towel.
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Follow these recommendations for incision care:
• Wash the incision gently with soap and water —don’t soak it. Do not let your
child soak in a bathtub with water deeper than the chest tube incisions (small
scars located beneath the main incision).
• A daily shower is recommended as soon as it is possible.
• Don’t use lotions, powders or creams on the incision until it has completely
healed (about four weeks).
• Encourage your child not to scratch the incision as it heals even though it may
itch.
• Watch the incision for signs of infection such as increased redness, fever, more
pain, swelling or drainage. Tell one of the members of your child’s health care
team right away if you notice any of these symptoms.
Your child’s cardiac surgeon may place Steri-Strips ™ on the incision.
Steri-Strips™ are thin tapes used in place of stitches. Steri-Strips™ stay on for
7 to 10 days. If Steri-Strips™ are used, the incision does not need to be washed
until after they are removed.
The chest tube sites take longer to heal. Occasionally, small amounts of drainage
may persist for a few days after tube removal. Care for the chest tube sites the
same way you care for the incision.
Eating
Good nutrition is very important to the healing process. After your child’s heart
surgery, a dietitian may meet with you and your child to ensure proper nutrition.
The goal is to provide enough calories and other nutrients from a variety of foods
for maintenance, growth and activity.
Your child will be able to choose from a variety of foods on the menu every day. If
your child would like to have a snack, talk to his or her dietitian. Every effort will
be made to honor your child’s requests.
Your child may not feel like eating, but he or she should try a couple of bites of
each food on the tray. The next day, your child might try a few more bites. Eating
helps build strength. If your child wishes to have food brought into the hospital,
check with the nurse or dietitian.
Salt (sodium) is a mineral that attracts and holds water. Eating foods containing
sodium cause the body to hold on to water. This may cause excessive fluid
to build up around the heart or lungs. A sodium-restricted diet may be
recommended for a short time. The major sources of sodium are salt and foods
with salt or sodium added during processing.
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It is common for your child’s appetite to be low after surgery so there are very little
restrictions placed on the diet early after surgery. When your child is dismissed
from the hospital, you will be instructed to have your child avoid salty foods for a
period of time. If you have questions about what your child should eat, speak with
the dietitian. If your child is an infant, you will need to discuss a care plan with his
or her dietitian.
Emotional
issues
During the recovery period, your child may express anger, irritability and
frustration. Your child isn’t feeling well, is restricted in activity, and has hospital
staff making demands at all times of the day and night. Often, parents feel many
emotions including guilt, anger, relief and grief. These feelings are normal.
Social workers, therapists, chaplains, clinical nurse specialists, and child life
specialists can help you to understand your child’s feelings as well as your own.
They can also help you adjust activities during this time. As your child feels better
and becomes more active, you may notice a positive change. As your child gains
strength, your lives may return to a more normal routine.
Take care of yourself during your child’s hospitalization. Get enough sleep,
exercise often and eat healthy. Take breaks from the hospital to do something just
for you, your partner or your other children. Accept offers of help from friends
and extended family members. When friends and family offer help, ask
them to spend time with your other children, bring meals if you are staying at the
hospital or after you return home, visit briefly, or help with the laundry.
Other children in the family may feel frightened, angry and upset about their
sibling’s surgery. They may need individual time with you. If the hospital is far
from your home, phone calls help your other children keep in touch. If possible,
arrange for an adult to bring brothers and sisters to the hospital to visit and to help
supervise during the visit.
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Going Home
Children have a wonderful ability to recover from illness and surgery very quickly.
Your child’s rapid recovery may surprise you. Your child’s health care providers
reevaluate your child’s condition and tell you when he or she can leave the
hospital.
When your child goes home depends on many factors, including:
• Whether your child’s medicines require adjustment and observation.
• Whether your child’s lungs are clear.
• How well your child’s incision is healing.
• How active your child is.
In addition, as your child’s caregiver, you must be able to do the following before
your child can leave the hospital:
• Understand the use of medications and their side effects
• Administer daily medications following proper techniques and schedules • Clean and care for the incision site
• Know when and how to call your child’s health care providers
• Care for a central venous catheter (PICC line) if required Your child’s heart surgery team provides information to help you plan for leaving
the hospital.
Before you leave the hospital, plans should include the management of your child’s
diet, medications, physical activity, and returning to school or tutoring.
Review topics on the Dismissal Checklist in the back of this guide with your
primary nurse before your child leaves the hospital. The information on this
checklist is important for you to know before you leave the hospital. Check off
each item on the list when you feel you understand it.
Discuss any concerns you have about your child traveling home with you health
care provider. Children can usually fly home under normal conditions. If you
and your child fly home, call the airline ahead and order a low-sodium meal and
wheelchair if needed.
Although uncommon, your child may need oxygen on the way home. If your
cardiac surgeon tells you that your child will need oxygen during the flight, you
will need to talk to a member of your health care team about arranging for oxygen.
You should be sure to do this at least 24 to 48 hours before the flight.
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Carry your child’s medicine on the plane with you; do not pack it in your luggage.
Check the Federal Aviation Administration’s (FAA) guidelines on how to pack
and carry medication on a plane. If traveling by car, label medications clearly and
pack medications in easy reach, taking care not to leave medications in extreme
temperatures.
When you leave the hospital you are given a supply of medications and
instructions and telephone numbers for members of you health care team. You
may be given forms to complete for a MedicAlert™ bracelet or necklace (Figure
5). MedicAlert™ is important if a medical emergency happens and your child
is unable to communicate and you cannot be found or located quickly. This
MedicAlert™ may include information about medications your child is taking,
including blood thinners, and may also let others know your child has a complex
heart condition (anomaly). Parents can also get a card they can carry with this
information on it.
Front
Back
Figure 5. MedicAlert™ bracelet and necklace
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After you arrive home, you will need to make an appointment for your child with
your local health care provider. Sometimes you make this appointment while your
child is still in the hospital. This checkup should be scheduled within a week to 10
days of arriving home. Your local health care provider will determine when more
visits should be scheduled.
You will also need to schedule a follow-up visit with your Mayo Clinic pediatric
cardiologist and possibly cardiac surgeon. This follow-up visit can take place
anytime between 6 to 12 months or as decided between you and your child’s local
health care provider and heart surgery team.
Exercise
and
restrictions
Although most children have no difficulty staying active, your child will be tired
after surgery. Your child needs to exercise regularly to strengthen his or her heart
and build up endurance. Encourage your child to exercise twice a day for at least
one month after surgery. The best exercise is walking. During bad weather, your
child can walk in an enclosed area such as a shopping mall. This protects your
child from the weather and provides a flat, stable walking surface.
Talk to your child’s heart surgery team about other safe exercises during the early
weeks after surgery. Your child should balance rest with exercise so he/she does
not get too tired. Encourage your child to be active but to take it easy for six
weeks and to balance rest with exercise. For the first six weeks after surgery, do
not allow your child to lift, push, or pull more than five pounds or engage in
rough play. Ask a member of your health care team about specific restrictions
and activities your child can participate in.
Initially, you may want to hold your child’s hand or have your child hold the
railing when walking up or down stairs. Allow your child to rest on a step if he
or she becomes short of breath. Call your health care provider if your child feels
light-headed or appears to be gasping or short of breath.
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Your child can gradually return to recreational activities after the initial recovery
period with the consent of your child’s health care provider. Encourage physical
activity such as swimming, bicycling, or walking, and arrange social interaction
with other children. Check with your child’s heath care provider before signing
up for community or school sports (Figure 6).
Figure 6. Returning to activities
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Preventing
infection
Keep the incision clean and leave it open to air until it is healed. Your child may
shower or bathe using soap and water. If your child takes a tub bath, do not soak
his or her incision and be careful when climbing in and out of the bathtub. Do not
put creams, lotions or powder on your child’s incision.
Normally, as your child’s incision heals, he or she will have soreness, redness,
swelling, and itching. Occasionally some children have a small amount of clear or
pinkish drainage from his or her incision site. If you have any concerns, see your
child’s health care provider. These symptoms decrease gradually during your
child’s recovery. Inspect your child’s incisions (including chest tube sites) every
day for signs of infection until the scab falls off and the incisions are completely
healed. Report any increased redness or swelling right away.
Infective
endocarditis
Infective endocarditis (also called bacterial endocarditis) is a serious, but
fortunately uncommon, infection of a heart valve.
People with certain heart conditions are more susceptible than usual to this heart
valve infection. If your child has any of the following conditions, he or she may be
susceptible to developing infective endocarditis:
• Rheumatic heart disease
• A leaking or narrowed heart valve (that can cause a heart murmur)
• Certain congenital heart diseases
• An artificial heart valve
How does it happen?
Germs (bacteria) live everywhere — in your child’s mouth, in your child’s nose,
on your child’s skin, and in your child’s intestines. Most bacteria are harmless
if the body’s natural defenses have a chance to control them, but bacteria can
be dangerous if they get into the bloodstream and lodge on abnormal tissues
of the heart.
Abnormal heart valve tissue and artificial heart valve materials cannot fight off
bacteria as effectively as healthy tissue. Bacteria that settle on these areas can
cause serious infections before the body’s natural defenses can go to work.
Infective endocarditis can develop when bacteria get into the bloodstream and are
carried to the site of abnormal valve tissue where they lodge and cause infection.
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When a heart valve is abnormal, the usually thin tissue covering the valve and
the area around it may thicken. This thickening can cause the opening of the
valve to narrow. Blood flowing through the narrowed valve moves faster. When
blood rushes through the narrowed opening of the valve, its impact can damage
surrounding tissue. Bacteria in the bloodstream can collect on the damaged tissue,
on the covering of the valve, or on the tissues surrounding an artificial heart valve.
These bacteria form tiny clusters that grow on the heart valve. These collections of
bacteria, called vegetations, can multiply and weaken or destroy heart tissue.
Who is more likely to get it?
While infective endocarditis sometimes occurs on normal heart valves, people
with valve abnormalities that cause turbulent blood flow through the heart have
a greater risk. The abnormalities could include scarring of a heart valve due to
rheumatic fever, a leaking or narrowed valve, an abnormal opening between
chambers of the heart or an artificial heart valve. Also, people who have had
endocarditis once are susceptible to getting it again.
Even if your child’s heart problem is minor and has never caused any difficulty or
if your child has had a heart defect repaired and feels entirely healthy, remember
your child still may be more susceptible than usual to infective endocarditis.
However, it is important to remember that infective endocarditis is uncommon —
even if your child is at a higher risk.
What are the symptoms?
Symptoms of infective endocarditis may be very vague and include fever, general
body aching and weakness, loss of appetite and headache.
How can it be prevented?
Think prevention. The most important thing your child can do to prevent infective
endocarditis is to use good oral hygiene every day and to have regular professional
dental care. This involves routinely brushing and flossing teeth and gums and
getting regular checkups.
If your child has cuts or other lesions on his or her skin, keep them clean and watch
them for signs of infection. Infective endocarditis can develop from skin lesions. If
you notice any cut or other lesion that is not healing well or looks infected, contact
your child’s health care provider.
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Antibiotic use
Antibiotics are drugs that offer protection from infective endocarditis by destroying
or controlling bacteria. Your child may be advised to take antibiotics before and
after certain medical procedures when bacteria could enter his or her bloodstream,
travel to the heart and cause an infection. Antibiotics, if indicated, may reduce
your child’s likelihood of getting infective endocarditis and its complications.
Before your child has certain procedures on his or her mouth or throat (including
routine cleaning at the dentist’s office), your child’s health care provider or dentist
may prescribe amoxicillin taken orally. Take it one hour before the procedure.
If your child is allergic to penicillin (amoxicillin is a type of penicillin), he or she
can take another antibiotic such as clindamycin or azithromycin. If your child is
unable to take oral antibiotics, his or her health care provider may prescribe an
injectable antibiotic.
If you have questions about your child’s risk of infective endocarditis or whether
he or she needs antibiotics before a medical procedure, talk to your child’s health
care provider.
Immunizations Children who have had heart surgery need to continue their regular immunization
schedule. Immunizations should be given as recommended by the American
Academy of Pediatrics. Talk with your pediatric cardiologist about immunization
instructions for your child. The following immunizations can be given safely after
heart surgery and are strongly recommended:
• Hepatitis B series, if your child has not already received this with regular
childhood immunizations.
• Pneumococcal pneumonia vaccine (the pneumococcal vaccine can be used in
infants)
• Influenza vaccine, given annually in the fall to your child after heart
surgery. This is also recommended for your immediate family
members (it is not given to people who are allergic to eggs).
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Day care,
school
and other
activities
Children requiring day care are best served at home or in smaller day care settings
with fewer children during the first few weeks after heart surgery. Depending on
progress and needs, your child is eventually ready to return to school after 5 to 6
weeks. Ask your child’s health care provider when your child can return to school.
Your child may need to start back to school half days and work up to full days.
Due to lifting instructions, you may want to keep a set of textbooks at home. Your
child should not carry a backpack for six weeks. You may want a tutor to work
with your child while he or she is out of school. Catching up on schoolwork can
be stressful. You may want to talk with your child’s teacher(s) ahead of time about
his or her medical needs.
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Medications
Following the medical program outlined by your child’s health care team before
and after surgery is essential for successful heart surgery. If you have questions
about medications your child is taking, talk with a member of the heart surgery
team.
Because your child’s medications may interact with other drugs, be sure to tell
the dentist or any other health care professional who treats your child about the
medications your child takes.
Review your insurance medication coverage before your child has surgery. Find
out if your insurance pays for take-home medications, or only for prescriptions
filled outside of the hospital. Talk to your medical social worker about any
questions or concerns you have about insurance medication coverage. If you
choose to have your prescriptions filled at a pharmacy near your home, keep in
mind the length of time it will take you to travel home and at what time you will
arrive.
Many different types of medications may be prescribed for your child to promote
healing and prevent infection.
Ask your child’s heart surgery team for more detailed information about
the medications and their side effects. Read all the material provided with
prescription medication and be sure to understand which side effects to report
right away. Ask your child’s heart surgery team to answer any questions you
may have about giving your child medication.
Diuretic
medications
Diuretic medications remove excess fluid from your child’s body. A diuretic
causes the body to produce more urine, which helps get rid of excess fluid. As an
outpatient, your child will probably take diuretics by mouth 2 to 3 times a day.
Many diuretics are available, such as furosemide (Lasix™), bumetanide (Bumex™),
chlorothiazide (Diurel™) and spironolactone (Aldactone™). Ask your nurse or
pharmacist about information specific to the diuretic prescribed for your child.
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Antiarrhythmic Antiarrhythmic medications decrease the number of irregular heartbeats. A
medications
diseased or enlarged heart may be more likely to have irregular rhythms.
Examples of these medications include Digoxin (Lanoxin™), amiodarone
(Cordarone™) and sotaltol (Betapace™).
Other heart
medications
Some medications lighten the workload of the heart by lowering the heart rate or
blood pressure. Others may strengthen the pumping of the heart. Your child’s
health care provider may prescribe such medications as ACE inhibitors, betablockers, and digoxin.
ACE (angiotensin-converting enzyme) inhibitors
Captopril (Capoten™); enalapril (Vasotec™); lisinopril (Prinivil™, Zestril™)
ACE inhibitors relax blood vessels so that the heart does not have to work as hard
to pump the blood. People taking ACE inhibitors should have their blood pressure
checked regularly as it may get too low. Signs of low blood pressure may include
dizziness or light-headedness. People taking ACE inhibitors may also need to
have their potassium checked because the medication can cause high potassium
levels, especially if someone has kidney insufficiency.
Beta-blockers
Atenolol (Tenormin™); carvedilol (Coreg™); metoprolol (Lopressor™);
nadolol (Corgard™); propranolol (Inderal™)
Beta-blockers block the stimulating effect of adrenaline on the heart.
Beta-blockers decrease the heart rate. They also are effective for reducing
blood pressure and may protect the heart against rhythm problems.
Digoxin
Digoxin (Lanoxin™) increases the heart’s pumping ability (the force of its
contractions) and controls certain fast heart rates. Digoxin is usually taken twice
a day for younger children and once a day for older children. Rarely, your child
may have nausea, poor appetite or visual disturbances if the digoxin level in the
blood is too high. Tell your child’s health care provider about any changes such
as nausea, visual disturbances, swollen ankles, decreased appetite, or shortness of
breath.
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Medications
that reduce
the risk
of forming
blood clots
Warfarin
Warfarin (Coumadin™) is taken by mouth once daily. It is an anticoagulant or
a blood thinner that helps prevent blood clots. The warfarin dosage is adjusted
using a blood test called the prothrombin time (PT). Prothrombin time is converted
to a standard scale called the international normalized ratio (INR). Talk with your
child’s health care provider about the goal range for INR results. Side effects of warfarin may include a tendency to bruise easily and bleed longer
from cuts. These effects are managed by adjusting the dosage based on the results
of blood tests. Take precautions to lessen the risk of bruises or serious bleeding,
such as having your child use a soft toothbrush and having your child wear a
bicycle helmet while biking. If you notice more bleeding than usual, tell your
child’s health care provider. Internal bleeding is a rare but a possible complication
of warfarin.
Because many medications can interfere with the blood level of warfarin, tell
your health care provider before your child starts taking new medications,
including over-the-counter medications.
Aspirin
Aspirin is another medication that can help prevent blood clots. Aspirin is
sold under many brand names, such as Anacin™, Ascriptin™, Bayer Aspirin™,
Bufferin™, Ecotrin™.
There is a risk of Reyes Syndrome if your child becomes infected with the
influenza and continues to take aspirin. If your child develops a fever with a
cough, do not give him or her aspirin until you are certain it is not influenza.
Talk to a member of your child’s heart surgery team or health care provider
before giving him or her aspirin.
Talk to your child’s health care provider and members of the heart surgery team if
you have any questions about your child’s heart surgery.
Mayo Clinic Arizona
480-301-8000
Mayo Clinic Jacksonville, Fla.
904-953-2000
Mayo Clinic Rochester, Minn.
507-284-2511
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How the Heart Works
The heart is a living, moving, working pump located in the middle of the chest
between the lungs (Figure 7).
Heart
Sternum
Lung
Ribcage
Stomach
Liver
Spleen
Large intestine
(colon)
Small intestine
Figure 7. Your child’s anatomy
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A normal heart has two sides, left and right (Figure 8). Each side is divided into
two chambers. The upper chambers are the atria (atria is the plural of atrium), and
the lower chambers are the ventricles. Blood from your body fills the right atrium,
and then the blood goes into the right ventricle where it is pumped to the lungs.
When it returns from the lungs, it goes into the left atrium. From there, the blood is
pumped into the left ventricle and out to the body.
Heart
Aorta
Pulmonary artery
Superior vena cava
Pulmonary veins
Left atrium
Mitral valve
Left ventricle
Rigth atrium
Tricuspid valve
Aortic valve
Pulmonary valve
Right ventricle
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Four valves prevent blood from flowing backwards. These one-way valves open
and close rapidly.
Pulmonary arteries carry blood from the right ventricle to the lungs. Pulmonary
veins return blood from the lungs to the left side of the heart. The aorta carries
blood from the left side of the heart to the rest of the body. Blood replenished
with oxygen is bright red, whereas blood low in oxygen is bluish-red (Figure 9).
Superior vena cava
brings oxygen poor
blood from upper
body to heart
Aorta carries
oxygenated
blood to body
Pulmonary arteries bring
oxygen poor blood to lungs
Pulmonary veins return oxygen
rich blood from lungs
Inferior vena cava
brings oxygen poor
blood from lower
body to heart
Blood low in oxygen (from body)
Blood high in oxygen (from lungs)
Figure 9. Normal blood flow through the heart
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The heart is amazing, but just as with any other pump, things can go wrong. For
some children, surgery is needed to help make the heart stronger and to restore
the child’s health. A child who needs heart surgery usually has a heart defect from
birth (congenital anomaly) (Figure 10).
Superior vena cava
brings oxygen poor
blood from upper
body to heart
Aorta carries
oxygenated
blood to body
Pulmonary arteries bring
oxygen poor blood to lungs
Pulmonary veins return oxygen
rich blood from lungs
Inferior vena cava
brings oxygen poor
blood from lower
body to heart
Figure 10. Congenital heart defect
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Dismissal Checklist
Review the topics on this list with your child’s primary nurse before your child
leaves the hospital. The information is important for you to know before leaving
the hospital. Check off the item when you feel you understand it.
o Pain management
o Medications
o Other options ____________________________
o Medications
o Informational leaflets on each medications
o Schedule for medications
o Blood tests
o Activity
o Lifting
o Showering
o Exercise
o Physical activities/hobbies
o Taking care of your child
o Incision care
o Use incentive spirometer
o CPR class
o Infant car seat trial (if applicable)
o Diet/eating
o Use automotive seat belts and child restraints as usual.
o Returning to school and/or daycare
o When to contact your health care provider
o Follow-up appointments
o List of support services/groups in your home area
If you have questions related to heart surgery or recovery, contact your child’s
health care provider.
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Notes
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