To Mend a Broken Heart (Preview)

PEDIATRIC HEART SURGERY

Product # 306B

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by Pritchett & Hull Associates, Inc. All rights reserved.

No part of this book may be photocopied, reprinted or otherwise reproduced without written permission from Pritchett & Hull Associates, Inc. Published and distributed by: Pritchett & Hull Associates, Inc. Printed in the U.S.A.

Table of Contents To mend a broken heart......................................................... 1-2 Your child’s health care team................................................ 3-4 Types of heart surgery............................................................ 5-6 Open heart............................................................................... 5 Closed heart............................................................................. 6 Before surgery........................................................................7-12 Blood transfusions................................................................... 7 Staying well.............................................................................. 8 Tests......................................................................................... 9 What to take to the hospital................................................. 11 The night before..................................................................... 12 In the operating room........................................................ 13-19 Getting ready.......................................................................... 13 The surgery............................................................................. 16 Temporary pacemaker.......................................................... 16 Closing the incision................................................................ 18 How long will it take?............................................................. 19 After surgery........................................................................ 20-29 ICU........................................................................................... 20 Pain......................................................................................... 22 After the ICU........................................................................... 23 Home again............................................................................ 24 Follow-up care........................................................................ 27 Other questions..................................................................... 29 Resources................................................................................... 30 This book is only to help you learn and should not be used to replace any of your doctor’s advice or treatment.

To keep the text simple, we often refer to your child as “him” or “her” throughout this book.

No parent likes to hear that his or her child has a heart problem. But each year about one in 125 children is born with one. These problems are called “congenital” (born with).

When you first found out about your child’s heart problem, you may have felt confused. You may have even thought you did something during pregnancy to cause this heart problem.

Today it is not entirely known what causes congenital heart problems. Researchers hope to tell us more some day. But as a parent, you have no reason to feel guilty or question whether you did something to cause this problem.

Surgery may be done to correct the problem. Some parents can choose when the surgery will be done, but for others, their child may be too ill to wait. One of the best ways you can help your child during this time is to be informed. Have questions ready for his cardiologist and heart surgeon. Learn all you can about what is to happen and what you and your child can expect. Let this book help you begin this process.

1

This diagram shows how blood moves through a normal heart. Use it to ask your doctor or nurse questions about your child’s heart.

Normal Blood Flow aorta to body

superior vena cava

to lungs

pulmonary veins from lungs

main pulmonary artery left atrium

pulmonary valve tricuspid valve inferior vena cava

right atrium

left ventricle right ventricle

Write the name of your child’s heart problem here:

Write down anything else that you want to remember about his heart problem:

2

pulmonary veins from lungs mitral valve aortic valve

Your child’s health care team • Pediatric Cardiologist – a doctor who has special skills in the care of children with heart problems Most often the pediatric cardiologist refers your child to the heart surgeon after running some tests to get details about the heart problem.

My child’s cardiologist is Dr. _____________________________ Heart Surgeon – a doctor who has special skills in heart surgery in children

My child’s surgeon is Dr. ________________________________ Anesthesiologist – a doctor who has special skills in caring for people during surgery This doctor gives medicine to make your child sleep through the surgery and monitors his vital signs during surgery.

My child’s anesthesiologist is Dr. _________________________

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• Pediatric Cardiac Nurses – nurses who have special skills in caring for children with heart problems

My child’s nurses are:

Child Life Specialist – a person who has special skills in the developmental needs of your child This person helps prepare your child for surgery and to recover from surgery by explaining things in terms he can understand.

My child’s child life specialist is:

4

Types of heart surgery The type of surgery used depends on your child’s heart problem.

Open heart Open heart surgery is done when the problem to be repaired is on the inside of the heart. The heart-lung machine is used during this surgery to pump oxygen-rich blood for the heart.

The most often used incision (cut) for open heart surgery goes straight down the chest (median sternotomy incision). The breastbone is separated, and the surgeon operates on or in the heart from the front.

median sternotomy incision

In a few surgeries for young girls, the cut is made beneath the breasts (submammary incision).

The surgeon lifts the skin off and then separates the breastbone (so the scar will be less visible).

5

Closed heart Most often, closed heart surgery is used when the problem to be repaired is on the outside of the heart. The heart-lung machine is not needed because the heart continues to pump during the surgery.

In most closed heart surgeries, the cut is made on the side, most often on the left side (thoracotomy incision). The cut is made between the ribs to reach the area that needs repair.

thoracotomy incision

6

Before surgery Blood transfusions Talk with your child’s doctor about whether blood might be needed for surgery. Infants and small children need at least one unit of blood to fill the heart-lung machine. Some heart surgeries may not require a blood transfusion, but at least two units of blood will be ready in case they are needed.

You may use blood from a:

blood bank All blood is checked for blood type and carefully tested for many kinds of infections.

directed donor You may have a family member or friend donate their blood at the blood bank for your child. You must know her blood type to choose donors who match. Tests will be done to make sure the donor’s blood matches. This blood will also be tested for many kinds of infections. It takes several days to process these tests. Be sure to contact the blood bank and plan ahead.

(Note: There may be added costs with this option.)

7

Staying well Try to keep your child away from sick people before the surgery. This can be hard if he is in day care or school. Sometimes, no matter how hard you try, he still gets sick.

If your child is sick, go to your pediatrician.

The pediatrician will be able to help decide if he is too sick for surgery. After your visit, call your child’s heart doctor or nurse, and let them know about his illness. Be sure to tell your child’s heart doctor if the pediatrician has given him any medicine.

The surgeon may want to wait on the surgery until your child gets better. Discuss this with his heart doctor when you call.

8

Tests To do the best job, the surgeon needs to know a lot about your child and her heart problem. Your child’s heart doctor will do tests to see the type of heart problem and how severe it is. These tests may include: echocardiogram (ECHO) This test looks at the heart's size and how the valves and chambers are working. It uses sound waves. cardiac catheterization This test looks at the heart's valves, chambers and main arteries to see how they are working. A catheter (thin tube) is put into an artery or vein and moved along to the heart.

Then dye is put in and moving pictures are recorded for your child’s heart surgeon to review. Sometimes vessels are stretched or closed during this procedure. magnetic resonance imaging (MRI)

and computerized axial tomography (CT scan)

These tests use computers to look at the heart in great detail. A CT scan uses x-rays and a MRI uses radio waves and a magnet. Some children will need medicine to sleep, so they will not move during these tests. A 3-D picture of your child’s heart can be made with the computer or a model might be made with a 3-D printer.

Other tests There are other tests that may be done a few days before surgery: blood tests chest x-ray electrocardiogram (ECG or EKG)

9

This is a good time to tell the doctors and nurses of any allergies or allergic reactions your child has ever had.

My child has had allergic reactions to:

10

What to take to the hospital You won’t need to take a lot. Hospitals have diapers, gowns, formula, toothbrushes, toothpaste and soap.

(The hospital may charge extra for some of these items.) You can bring pajamas (2-piece is best), slippers and a few special books, toys, games or movies. Most children feel better if they have some of their own things from home. Many times, children have a special item like a stuffed animal or blanket.

These are fine to bring to the hospital. Leave all jewelry at home.

11

The night before You will need to shampoo his hair and give him a bath. You may be given a special soap to wash his chest and back.

Follow the instructions about when he must stop eating and drinking before surgery. Most of the time, this is at least 4-8

hours before the surgery. He needs to go to surgery with an empty stomach so there is less chance of an upset stomach (vomiting) during or after surgery.

12

In the operating room Getting ready The operating room has special equipment needed for heart surgery.

Your child will be attached to a heart monitor. This shows the heart rate and rhythm. Then, she is given anesthesia to keep her asleep during the surgery.

NOTE: It may take 1 to 2 hours to prepare and do all the tube placements before the surgery begins.

Once asleep, a breathing tube (endotracheal or ET tube) is put in her windpipe. This tube is attached to a breathing machine (ventilator).

13

Intravenous (IV) tubes are put in his veins. These are used to put

medicines and fluids into the body. Most of the time, the IV is put in a large blood vessel in the neck. In the case of an infant, it may be placed in the groin. There may also be 1 or 2 other IVs used.

A special tube (arterial line) is put in an artery (the blood vessel that you can feel a pulse in). This is used to monitor his blood pressure. It is often placed on the wrist, but it can be placed in many sites just like the IV. The arterial line can also be used to draw blood for the tests.

Often a small monitor device (pulse oximeter) is attached to a finger or foot with tape. This device measures the oxygen in the blood. Another monitor may be placed on the forehead. This will look like a long band aid and helps to monitor oxygen to the brain.

IV

pulse oximeter arterial line

pulse oximeter

14

NG tube stomach

bladder

Foley catheter

Medicines cause your child’s stomach to go to sleep during surgery. To prevent her from vomiting, a nasogastric tube (NG tube) is placed in the nose down to the stomach to empty it.

During surgery, medicines are given through the IVs. The kidneys must take this extra fluid out of the body. To measure the urine, a tube (Foley catheter) is put into the bladder through the urinary opening (urethra). This tube is attached to a device that drains and measures the urine.

These tubes are left in your child during surgery and for a time after.

You may see some or all of these tubes when you first visit your child after surgery.

15

The surgery Once all the tubes are in place, it is time for the heart surgeon to begin the surgery. Where the surgeon makes the incision into the chest depends on the type of surgery. If it is open heart, measures must be taken to open the heart.

The heart-lung machine is used during most open heart surgeries.

As this machine pumps blood for the heart during surgery, it also cools the blood and lowers the body temperature. This decreases the body’s oxygen and energy needs.

Near the end of the operation, your child is gradually taken off or weaned from the machine. Slowly, the blood is warmed and the flow is returned through her heart and lungs.

Once the surgeon is finished working on the heart, the last few tubes (chest tubes) and in some children, temporary pacing wires are put in. After heart surgery, you can expect your child to have from 1 to 3 chest tubes. These let extra fluid and blood drain out.

Temporary pacemaker Near the end of the surgery, small wires might be attached to the surface of the heart in case a temporary pacemaker is needed. Some infants and children who have open heart surgery will need to use a temporary pacemaker. This is a small box, outside the body, that is hooked up to wires that have been placed on your child’s heart. The pacemaker may take over if the heart rhythm is irregular or needs extra beats until the heart recovers from the stress or swelling from surgery. The wires will be removed (without surgery) before your child leaves the hospital.

16

chest tubes

temporary pacemaker

wires (on surface of heart)

17

Closing the incision If the breastbone (sternum) has been opened, it is brought together and wired back in place. The wires will stay in the chest and are only seen on chest x-rays. These will not make metal detectors go off or keep your child from having special x-ray tests like MRIs. The incision on the inside of the skin is closed with special stitches that later dissolve. The outside skin is held together with adhesive strips (Steri-strips®) or skin adhesive (Dermabond®). If staples are used, they will be taken out a week or more after surgery.

Steri-strips

If a side incision was used, there is no entry through the breastbone, and there are no wires.

18

How long will it take?

Heart surgery may take 2 to 8 hours or more. Most hospitals have a special place for parents to wait. This area may have phones so you can get updates on your child’s surgery. After surgery, a member of the surgical team will come and talk with you. As you think of questions for the surgeon, write them down.

19

After Surgery ICU Most children go to an intensive care unit (ICU) after heart surgery. You will be able to see your child after he has been checked by the ICU doctor and his bedside nurse. Most of the time there is a special waiting room so you will be near him during the ICU stay.

Some of the equipment used during surgery will still be attached to him in the ICU. Slowly, the tubes and wires will be removed. This takes place over a number of hours or days as he improves and gets stronger. He will gradually be able to start eating and drinking.

When you first see him, you may notice some swelling. During surgery, all the medicines are given right into the veins. It is common for this extra fluid to cause some swelling, especially in the face and eyelids. Don’t worry. The kidneys will handle the extra fluid, and the swelling will slowly go away.

20

You are a big part of the healing process. But you may be nervous about touching or talking to your child. It’s OK to stroke, touch and kiss him. Just ask your nurse if it is a good time to do so. If the breathing tube is still in place, he will not be able to talk to you. But it is very important for you to talk to him while he is in the ICU. Hearing your voice will assure him you are close by and make him feel more secure and less afraid. Your child may be excited to hear your voice. So your nurse may ask you to avoid talking until he is more stable.

21

Pain Caring for infants and children after surgery is more than checking blood pressures, heart rates and rhythms and chest tube drainage.

Nurses and doctors are concerned about your child being in pain after heart surgery. Pain medicines are used to help with your child’s discomfort.

Comfort measures such as changing positions can also help ease pain. Do things you know she likes. You might give her a backrub, read a story or sing softly.

Sometimes your child has trouble telling you what she needs or wants. This may cause fear, anxiety or frustration. These may make her cry, too.

22

After the ICU The ICU stay is tailored for every child, and each child is different.

As a rule, children leave the ICU when they: can breathe without the machine have a stable blood pressure have good heart rhythms Leaving the ICU may be scary for you. While your child is in the ICU, you may feel better knowing there is extra monitoring and that nurses are closely watching your child. Just keep in mind, when she is able to leave the ICU, you are one step closer to going home.

After the move to a regular room, your main job is to learn what to do once you get her home.

23

Home again You must learn to give heart medicines and know what each does. It is not always easy to give a child medicine, so you need to practice.

Keep a chart of the medicines he will take at home. You need to know both the brand names and generic names.

Medicine name(s)

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What dose to give

How to give it

When to give it

What it does

Rx will last until:

You will want to know how to pick up your child after heart surgery.

Most children will be uncomfortable if they are picked up under their arms. Ask your surgeon if there is a special way to hold your child.

After surgery, I should pick my child up by:

25

Most of the time, no special care is needed for the incision or chest tube sites, except for bathing with soap and water. But, you should look for redness or darkness, tenderness, swelling or drainage from these areas. If you find any of these or fever, call the heart doctor. (These are signs of infection.)

Your doctor will tell you about any limits or special needs she may have after getting home. Ask the doctor or nurse what you need to know about these: Diet

Exercise

Rest

Bathing/swimming

Incision care

Returning to school/day care

Never hesitate to ask a question. Write your questions down as you think of them so you won’t forget what to ask the doctor or nurse.

26

Follow-up care After leaving the hospital, your child will have checkup appointments with their doctors (may include heart surgeon, cardiologist, and pediatrician). These appointments will be made before you leave the hospital. They are important because his progress needs to be checked. Make sure you have enough of each medicine he will be

taking to last until these appointments.

My child's follow-up appointments are: date

time

date

time

Heart surgeon phone #: Cardiologist phone #: Pediatrician phone #: 27

After the surgery, try not to treat your child “special” any longer than the normal recovery time. Unless the doctor has said not to, encourage him to go and play with other children. The heart problem is repaired. This is the time to let him grow and develop as if he never had a heart problem.

28

Other questions I may have: Who do I call if a problem occurs?

Phone number:

29

Resources Alliance for a Healthier Generation healthiergeneration.org

A place for kids to learn about good nutrition and living healthy American Heart Association heart.org National Center 7272 Greenville Avenue Dallas, TX 75231 (800) 242-8721 Text to chat: (214) 444-6688

Learn about heart diseases, conditions and treatments Kids With Heart kidswithheart.org (800) 538-5390

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Support, information and education for the families of children living with congenital heart defects

We wrote this book to help you—the parent of a child who needs heart surgery. We want to help you get answers to your questions and know what to expect in the hospital.

Right now, one of the things you can do for yourself and your child is to find out as much as you can about his or her heart problem and the surgery to fix it.

Notes

some of our topics cover:

• Heart disease • Heart disease risk factors • Heart surgery • High blood pressure

• Stroke • Kidney failure • Diabetes • Nutrition • Exercise • Head injury

• Home care • Asthma • Chronic lung disease • Hip or knee surgery • Bowel surgery

write or call toll-free for a free catalog of products and prices:

1-800-241-4925

About the author

Kathy Sloan, RN, MN, CPNP, is a Pediatric Nurse Coordinator for Spina Bifida at the Medical University of South Carolina. Ms. Sloan has taught both undergraduate and graduate nursing students as well as worked as a staff nurse.

She was the Cardiothoracic Surgery Clinical Nurse Specialist at Egleston Children’s Hospital in Atlanta from 1988 –1995. At Egleston, her focus was parent/patient education including development of a preoperative teaching program and video for families facing heart surgery.

Reviewers for this book Jane Salvaggio, ARNP Cardiovascular Surgery Nicklaus Children’s Hospital Heart Program Miami, FL

Special thanks to previous reviewers: Teresa A. Lyle, APRN, MN, CPNP Kathy Murphy, MSN, RN, ARNP Valerie W. Kelley, CPNP Lori Medicus, RN, MN, CPNP James Parks, MD Cynthia M. Stevens, RN, MSN, CCRN

We believe that you have the right to know as much as you can about your health. Our goal is to give you enough facts to get the main points clearly in mind. We do this with medical accuracy, warmth and humor. The result for you: less tension, more healing and a good idea of what to ask your doctor, nurse or others.

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