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Cardiology and Cardiothoracic Surgery Patient Family Resources

heart patient and family

Children’s Health℠ is here to help you better understand your child’s heart condition or illness, learn about treatment options and help you feel more comfortable during your time at The Heart Center. From a detailed heart terminology guide to support group information to tips on preparing for surgery, we offer a number of resources to guide you through your child’s care.

  • Patient Family Resource Guide

    This guide provides the information you need to feel empowered during your stay at The Heart Center. From care tips and resources to program overviews, this easy-to-read guide will help you along your journey.

    Download Patient Resource Guide

  • The Heart Center Glossary

    It can be helpful to familiarize yourself with some common terminology our team members use at The Heart Center. This glossary will help you understand the various terms your care team may use to describe your child’s needs.

    Cardiac Catheterization

    The process of introducing a thin, flexible tube called a catheter into a vein or artery and guiding it to the heart chambers to measure pressures in the chambers, sample blood and take pictures (angiography). Your child will come to the hospital the morning of the procedure or be admitted the night before. Your child will receive sedation for the procedure and stay in the recovery room for a period of time. Most times your child will be sent home the day of or one to two days after the procedure.

    Interventional procedures performed during catheterization include:
    • Angioplasty
      Dilating or increasing the size of blood vessels.
    • Atrial Septal Stent
      Placement of a stent across the foramen ovale to keep the atrial septal open to allow blood to shunt freely across the septum.
    • Balloon Atrial Septostomy
      A balloon is used to open the atrial septum to allow the blood to flow freely across the septum.
    • Catheter Devices
      A stent is a small wire mesh tube. It is most often made of stainless steel. It can be placed in a narrowed blood vessel.
    • Coil Closure of Collaterals
      A procedure or technique used during cardiac catheterization or surgery using a coil, a device placed in blood vessels to occlude blood flow.
    • Hybrid Procedure
      A catheterization and surgical procedure where bands are placed on the pulmonary arteries to decrease pulmonary blood flow and a stent is placed across the ductus arteriosus to provide “shunting of blood” from the aorta and pulmonary arteries.

    CBC

    This stands for complete blood count.

    CBC and Diff

    Complete blood count including a differential or counts of the various types of blood cells.

    Celsius Vs. Fahrenheit

    Celsius is the temperature scale used in medicine instead of Fahrenheit.

    Conversion examples:
    Fahrenheit to Celsius: Subtract 32 and halve the resulting number [(temp - 32)/2].
    Celsius to Fahrenheit: Double the number and add 32 (2x temp + 32).

    Chest X-ray

    A chest X-ray is a noninvasive test. It provides pictures of structures in the chest such as the heart, lungs, ribs and bones. It also provides information on the size and position of the heart. A chest X-ray also can be used to check the position or placement of tubes such as breathing tubes, chest tubes, central lines or nasogastric tubes.

    Chyle

    A milky fluid consisting of lymph and emulsified fats formed from foods in the small intestine absorbed by the lacteals and passed into the blood through the thoracic duct.

    Chylothorax

    This is leakage of chyle into the pleural space (around the lung). Treatment begins with draining the fluid and eliminating fats from the diet. Nutrition will be consulted on the best formula or foods your child can eat should they develop a chylothorax.

    Computed Tomography Scan (CT Scan)

    A CT scan is a study that shows cross-sectional pictures of the body. The CT scan shows in great detail the internal structures and any abnormalities. Some CT scans need contrast given in an IV or by mouth.

    Congenital Defect

    This is any type of defect present at birth.

    Congestive Heart Failure

    A condition in which the heart is unable to pump the amount of needed blood to the body.

    Ductus Arteriosus

    A connection outside the heart of the fetus that is between the pulmonary artery and aorta. It normally closes after birth.

    Echocardiogram (ECHO)

    This noninvasive test uses ultrasound to provide a picture from sound waves that are reflected from an organ or tissue. A transducer is placed over the chest, and high-frequency sound waves bounce off the heart structures. They are transmitted back through the transducer to produce images of the heart structure and heart function.

    Edema

    This describes large amounts of fluid in the tissues of the body, more commonly called swelling.

    Electrocardiogram (ECG)

    This is a noninvasive test. Small special pieces of tape called electrodes are placed on the arms, legs and chest. These detect the electrical changes of the heart and are able to record them by a graphic tracing.

    Electrolytes, BUN/Creatinine

    Blood tests measure electrolytes (such as sodium, potassium and chloride), blood urea nitrogen (BUN) and creatinine levels and reflect how well the kidneys are working.

    Extracorporeal Membrane Oxygenation (ECMO)

    A special procedure that uses an artificial heart-lung machine similar to the cardiopulmonary bypass equipment used during open-heart surgery. ECMO also performs the work of the heart and lungs.

    Fiberoptic Endoscopic Evaluation of Swallowing (FEES)

    This test may also be recommended if there is vocal cord damage. It is used to evaluate stages of swallowing and if your baby can eat by mouth. It can be done at the bedside.

    GERD

    This stands for gastrointestinal esophageal reflux disease.

    GTT

    The Latin meaning is guttae or drops. GTT is used in medicine as an abbreviation for a dosage form known as drips.

    HGB/HCT

    Hemoglobin and hematocrit (a.k.a. “crit”) are molecules that carry oxygen to the body.

    Holter Monitor

    This noninvasive test uses a portable ECG recorder that is worn by the patient for a specified period of time, usually 24 or 48 hours. This test evaluates how fast or slow the heart beats while the patient is involved in various activities, as well as sleeping. These activities are linked with the ECG tracing.

    Hypertrophy

    The enlargement of a tissue or organ due to increase in the size of its cells.

    Kilogram

    A unit of measure that provides the weight of a person (1 kilogram = 2.2 pounds).

    Magnetic Resonance Imaging (MRI)

    A noninvasive test that uses magnetic waves to provide a three-dimensional view of the body without the use of radiation. This test is similar to a CT scan and may also require contrast. Newborns and small infants may need to be intubated for this study because it can take some time, and movement of any type may affect the results. A MRI cannot be done on patients with pacemakers, mechanical prosthetic valves or other medically implanted devices.

    Mitral Valve

    The heart valve between the left atrium and left ventricle that has two cusps or flaps.

    Murmur

    The noise made by blood flow that may or may not be normal.

    P.O.

    This is a medical term that means to take something by mouth.

    Prostaglandins

    These are hormone-like substances made from fatty acids that are found throughout the body tissues and thought to have important roles in tissue metabolism and blood flow. They can be given in an intravenous drip solution to keep the ductus arteriosus open in newborns with congenital heart defects.

    Regurgitation

    This is an abnormal backward flow of blood through a valve in the heart.

    Shunt

    This is the passage between two blood vessels or between the two sides of the heart. Placed during surgery, it diverts blood from one part of the body to another.

    Tachycardia

    This is the term for a fast heart rate for the age of the child.

    Tachypnea

    This is fast respiratory rate/breathing.

    Tricuspid Valve

    This heart valve between the right atrium and right ventricle has three cusps, or flaps.

    Valve

    This is an opening covered by membranous flaps between two chambers of the heart or between a chamber of the heart and blood vessel. Normally when a valve is closed, blood cannot pass through.

    Vein

    This series of vessels of the vascular system carries blood from various parts of the body back to the heart.

    Ventricle (One)

    Ventricle One of the two main pumping chambers of the heart. The left ventricle pumps oxygenated blood through the aorta to the body. The right ventricle pumps blood through the pulmonary artery to the lungs.

    Video Fluoroscopic Swallow Study (VFSS)

    This test may also be used to evaluate swallow dysfunction in your baby. It is done in radiology and requires the baby to be able to suck and swallow approximately 10 milliliters of a radiopaque liquid (usually barium) mixed with formula. As the baby sucks, images are recorded and analyzed to determine if the baby can safely swallow his or her formula without risk of aspiration.

    Vocal Cords

    Vocal cords are structures in the larynx that are designed to vibrate and make sound when air passes through. Occasionally, damage to one or both vocal cords can occur during cardiac surgeries. Symptoms of vocal cord damage include a hoarse or weak cry, inability to eat or suck a bottle without coughing or choking, and possible pneumonia from aspirating fluid or food into the lungs. Vocal cord injury is diagnosed by a physician who specializes in ear, nose and throat disorders. Using an endoscope (a special camera), this ENT physician can directly view the vocal cords to determine movement and position.

  • Common Medications

    ACE Inhibitors/Vasodilators

    ACE stands for angiotensin converting enzyme inhibitors. These medications work to stop the constriction of blood vessels and decrease the resistance so it is easier for the blood to flow through the body’s organs. It also works to decrease blood pressure. Examples of ACE inhibitors are Enalapril and Captopril.

    Possible side effects of ACE inhibitors include:
    • Dry, persistent cough
    • Weakness or swelling
    • Low blood pressure and dizziness

    Antiarrhythmic

    These medications treat irregular heartbeats.

    Examples of this type of medication include:
    • Amio​darone
      This medication suppresses abnormal electrical conduction in the heart. It is important to have thyroid testing, liver functions tests and an eye exam while taking this medication.
    • Beta-blockers
      This medication treats arrhythmias. It increases the non-excitable or refractory period of the atrioventricular (AV) node.
    • Calcium Channel Blockers
      These medications decrease the calcium entry into cells to slow the heart.
    • Digoxin
      This medication causes the heart to slow and pump blood more effectively. It increases the force of each contraction of the heart. This medication may also be used to treat rapid heart rate. Take digoxin at the same time each day. There can be a risk of toxicity. If you miss a dose or your child throws up the Digoxin, it should not be re-dosed. Always consult your physician about dosage and medication.
    • Isuprel
      This medication is used as a cardiac stimulant to treat an abnormally slow heart beat and increase the strength of the heart’s pumping.

    Anticoagulants (Aspirin, Plavix, Coumadin, Lovenox or Heparin)

    This group of medicines is used to reduce the formation of clots in the bloodstream. It is important when taking anticoagulants to take them at the same time each day and schedule regular blood tests. The goal is to make sure your child’s blood is within the target range. Always consult your physician about dosage and medication.

    Anticoagulants are used to:
    • Reduce the risk of clot formation in artificial grafts (an example is a BT shunt)
    • Decrease the risk of clot formation secondary to blood moving slowly through the body due to the heart not pumping properly

    Beta-blocker

    This medication is used to treat arrhythmias. It increases the non-excitable or refractory period of the AV node. Examples of beta-blockers are Propranolol and Atenolol.

    Diuretic (Lasix or Furosemide)

    This group of medicines works to stimulate the kidneys. Diuretics remove excess water and salt from the body to increase urine output. The different diuretics work on different parts of the kidney. It is important to call your cardiologist if you have diarrhea or vomiting while taking diuretics. With diarrhea and vomiting, there is an increased risk of dehydration.

  • Pre-Operation Information Videos

    This video will show what you can expect and what you need to do to prepare for your child’s surgery. You’ll hear from our expert team members about the steps taken before, during and after surgery.

    English

    Espanol

  • Support Services

    At Children’s Health, we don’t just treat the physical ailments of your child’s heart. We also help with the emotional and psychological aspects of your child’s heart condition.

    Child Life | 214-456-6280

    Child life specialists focus on your child’s developmental growth and help your child maintain a sense of normalcy during what can be a very abnormal time. Each child life specialist can educate you in ways to connect with and interact with your child even while he or she is undergoing intense medical treatment. They are also available to prepare and assist siblings in coping with a hospital setting. Child life specialists can assist with developing a plan with your child’s school when hospitalization or illness impacts his or her education.

    Pastoral and Spiritual Care | 214-456-2822

    Pastoral Care offers interfaith spiritual support and emotional care to patients and their families. Our chaplains are knowledgeable about spiritual and emotional development unique to children. The Pastoral Care team is dedicated to creating a compassionate environment that respects every individual's spirituality, as well as promoting health and wellness of body, mind and spirit. Chaplains are available to provide prayers, blessings or other rituals at your request. Your personal spiritual leader (pastor, imam, priest, etc.) is also welcome to visit throughout your child’s hospitalization. Our hospital chaplains are available 24 hours a day, seven days a week.

    Social Work | 214-456-2300

    The Heart Center at Children’s Health has both outpatient and inpatient social workers to support you and your family throughout pregnancy, hospitalization and follow-up care. These social workers, dedicated solely to our families seeking cardiac care, are specially trained and licensed to counsel families coping with illness. They assess patient and family psychosocial needs, provide crisis and therapeutic counseling, prepare families for transition from hospital to home and educate and connect families to community resources. Our team of social workers focuses on the unique needs of every family during each visit to the hospital. Our goal in social work is to help families cope with illness by addressing anxiety and stress, financial concerns or day-to-day details that need attention during a child’s illness.

    Language and Interpreter Services | 844-424-4537

    For families who do not speak English, talking to nurses and doctors about their child’s illness can be challenging. That’s why we offer interpretation services free of charge. Children's Health staff members have access to interpreting services for talking with patients and their families, no matter the language. Staff Spanish interpreters are available 24 hours a day, seven days a week, every day of the year. For all languages, other options are available over-the-phone interpreting services. The Heart Center has two dedicated Spanish interpreters available in the clinic and on the Cardiology Units.

    School Services | 844-424-4537

    The School Services department integrates information regarding pertinent medical and educational needs to create individualized school recommendations for patients when they are discharged and to determine a school plan for patients with extended hospitalizations. The goal of the School Services department is to help patients maintain their current academic standing or improve their academic rankings with our support.

    Patient Care Concierge | 214-456-2273

    At Children’s Health, we want to work together to ensure that patient care is delivered in a professional and courteous manner that respects the dignity and rights of our patients and staff. The Patient Care Concierge assists families with services we offer or refers them to other resources for help. You may reach the Patient Care Concierge through the CARE line for any other special needs you may have during your stay at Children's Medical Center.

  • Support Groups

    You are not alone in your child’s heart issues. There are a number of families who have gone through similar situations. Find a support group to help your entire family cope with your child’s diagnosis.

    Support for families impacted by congenital heart defects

    Mended Little Hearts
    “When my son was finally home from the hospital, I was terrified, scared and depressed. When Mended Little Hearts came into my life, I finally felt a sense of security – knowing that I wasn't alone and other parents felt the same way I did." - Jaime Olsen

    Support for children and families with hypoplastic left heart syndrome

    Sisters by Heart
    “I love this forum. It's been a great way to connect to other women who are going through the same issues, plus it helps to encourage others through my own experiences.” - Cindy Bagwell

    National Pediatric Cardiology Quality Improvement Collaborative
    “We are parents of children with hypoplastic left heart syndrome. Our goal is to wade through the vast amount of information, which can be confusing at best, and provide some practical help to both clinical providers and each other."

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