Information About CHAMP for Parents
How the CHAMP® program helps patients
Between the discharge from the first hospital stay in the newborn period and a second staged cardiac surgery (the inter-stage period), children who are born with complex congenital heart diseases are at risk for rapid changes in their condition. These changes may require medical management or potential hospitalizations. We want to support you and your child during this stressful time by helping you communicate with your baby’s home monitoring team.
The CHAMP team has a provider on-call 24 hours a day, seven days a week, to provide easy access for communication for new concerns. In addition, the CHAMP team reviews each child’s information every day, and also meets weekly to discuss each child's progress and reviews interstage data. We utilize the patient portal (MyChildrensMercy) and frequent phone calls to communicate with our families.
Prior to your child's initial discharge, the CHAMP team will educate you about how to operate any equipment that we use to perform interstage monitoring.
CHAMP: What to expect
When a baby is discharged from the hospital after their first operation for complex congenital heart disease, their care can be quite involved. We want to make sure that you will be supported at all times, and we will do our best to make sure that you are not overwhelmed. Before your baby is discharged, you will receive instruction on many aspects of the care that may be needed.
This includes things like review of your baby’s heart defect, the equipment that will be used at home for your child (oxygen saturation monitor, scale, and potentially feeding equipment), and red flags (a red flag is an alert that may signal a potential problem for your baby). We will provide CPR education or a refresher. We will ask you to check your child’s oxygen saturation and heart rates twice a day and weigh your child daily.
During the interstage period, your child may need care and evaluation by other specialists. We work closely with other specialists as well as with your pediatrician and cardiologist to provide the best care for your child and to coordinate appointments if possible. About one month after your child’s next surgery, they will graduate from the CHAMP home monitoring program. After this, you will follow up with your child’s primary pediatric cardiologist at your preferred location.
Red flags: When to call about your child
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Any behavior or bodily change that worries you.
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Temperature over 101 degrees Fahrenheit (100oF).
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Does not gain an average of 20 grams/day over 7 days.
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Increased work of breathing or stopping to breath during feeding.
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Feeding difficulty, increased sweating during feeds or excessive spitting.
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Vomiting or diarrhea (more than three episodes in 24 hours).
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Irritability, won't calm or decreased response to you.
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Low oxygen saturations (less than 70%).
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Fewer than four wet diapers per day.
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Three days of weight loss.
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Tachycardia (High Heart rate).
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Bloody stools.