Pediatric Cardiology Home Monitoring Program

Caring for Your Child Safely at Home

Typically, a child with single ventricle physiology will have at least three surgeries in their lifetime. Recovery at home between surgeries provides many physical and mental health benefits to children, including less stress and more time to heal, grow and develop.

Your child’s first surgery is usually performed within a week of birth. Their next surgery typically takes place when they are four to six months old.

The time between a child’s first and second surgery is called the interstage period and is one of the most critical periods in their cardiac care. It is during this time that the Home Monitoring Program has been shown to be most effective. 

Our approach

Our involvement with your child extends far beyond cardiac care. We want to make sure your child is growing and developing overall. Our physicians and therapists who specialize in complex care work together with you to help your child achieve developmental milestones similar to their peers.

Your child's care team includes:

• Pediatric cardiologists
• Dietitians and nutritionists
• Primary care physicians
• Occupational therapists
• Physical therapists
• Speech-language pathologists
• Palliative care specialists
• Social workers
• Pharmacists

What to expect

For parents, the thought of leaving the hospital and caring for their infant at home can be intimidating. That’s why the teams at Wellstar MCG Health Medical Center and Wellstar Children’s Hospital of Georgia are here for you and your baby through every stage of their care.

Before you go home

While you’re still at the hospital, we will thoroughly educate you and your family on what you need to know to confidently and safely care for your child at home.
We'll explain:

• Your baby’s diagnosis: We go over your child's heart condition and talk about what you can expect.
• How to monitor your infant: We show you how to take and input your child’s vital signs every day. Recording their weight, heart rate and pulse oximetry daily is important because we monitor this data and look for trends that tell us how your baby is doing.
• What to feed your baby: We'll work with you to determine how much and how often to feed your child to ensure adequate weight gain, which is key to successful outcomes.
• Early signs of distress: You will learn how to tell if something is wrong, when you need to call us and when to come in. We encourage telehealth video calls for those times when you’re not sure but want to connect with us for our input.
• When to come in: If you are concerned, call us immediately. We can pre-alert the Pediatric Emergency Department and intensive care unit at Wellstar Children’s before you get here so that there is no delay, allowing us to treat your baby faster.

Home monitoring equipment

To successfully track your baby's progress at home, you will need special equipment. We provide what you need and show you know how to use each piece of equipment before you go home. You will receive:

• A digital scale that allows you to weigh your baby. Gaining weight is a big factor in health and survival during the interstage period.
• A pulse oximeter (pulse-ox) that helps you check your child's blood oxygen level. This is important to make sure their oxygen level doesn't drop too low.
• An oxygen tank, which assists in emergencies such as difficulty breathing or low blood oxygen levels.
• A tablet to input your child’s weight, heart rate and pulse-ox readings daily. This data about your child's well-being helps us monitor how your child is progressing. Your doctors can make adjustments and recommendations based on the information you enter.
• Your child’s heart "passport,” a personalized booklet for you to bring with you whenever your child sees a healthcare provider. It gives an overview of their condition, describes their care plan and includes important contact numbers.

What if I am unable to care for my child?

We understand there are circumstances that can make caring for a sick child hard on a family—you might be sick yourself or there may be other circumstances that make caring for a child with a heart condition difficult. If this is the case, we will plan for outside help to assist if you are unable to manage home monitoring for your child.

Connect with us

Children in our program typically visit their cardiologist every two weeks (or more often if needed). We will also call you regularly to check in, see how your baby is doing and how you are coping. In between, we encourage you to connect with us through:

• Phone calls: Parents can contact us any time. You can ask us about medications, reactions or anything that is of concern regarding your baby’s health.
• Telehealth visits: To prevent unnecessary emergency visits to the hospital, we offer telehealth calls. Calling us for a virtual visit gives us the opportunity to assess your baby and advise you on whether you need to come in or not. Telehealth is a great tool because our patients who are not local can get in touch without having to make a long drive.
• Complex care clinic visits: Our high-risk clinic customizes your child's visit depending on their needs. We make every effort to organize appointments with your complex care physicians, nutritionists, pharmacists and therapists (speech, physical and occupational) to see your child on the same day.