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Mended Little HeartGuide

Table of Introduction Contents SECTION Transitioning From Hospital to Home After the much-anticipated birth of a child with CHD, the reality of bringing him or her home can be both exciting and terrifying. While your child was in the hospital, doctors and nurses were his or her primary caregivers. Once you’ve returned home, you are faced with taking over care, which can be very scary. Here are some things you can do to help you feel more at ease: Educate yourself on your child’s heart defect. A diagnosis of CHD should come with an honorary diploma for parents who, in a matter of days, go from blissfully expecting to incredibly well-informed about an unfamiliar medical condition. If your child was diagnosed before birth, you may have had some time to prepare yourself and absorb the information you were given. This is both a blessing and a curse. On one hand, knowing about a child’s CHD before birth allows you to educate yourself and make more informed decisions about care. On the other hand, the knowledge can create a very stressful pregnancy. If your child was diagnosed after he or she was born, you may be caught in a whirlwind of information that is difficult to manage. Before being discharged from the hospital, ask as many questions as necessary to get a solid understanding of your child’s heart defect and any surgeries or procedures your son or daughter had. Research his or her heart defect using ONLY reliable resources. (Your child’s doctor may provide you with some and Mended Little Hearts website at MendedLittleHearts.org has a list under the heading “CHD Resources.”) About My Child’s Heart Learn everything you can from the nurses. Nurses are the closest thing hospitals have to parents. They are at the bedside doing everything from changing diapers to providing life-saving surveillance and care. When you get home, you’ll take over their role, so don’t be afraid to ask them to teach you how to do something that you have seen them do. Keep in mind that nurses are people, and not all people are good teachers. You will quickly learn which nurses provide the best information and will benefit from working with them and asking questions. Know emergency techniques. Plan for the worst but expect the best. Start with cardio pulmonary resuscitation (CPR) training. As the parent or caregiver of a child with CHD, you’ll probably be taught how to do CPR at the hospital. If you have not been taught before discharge, ask. Also, learn when you should call 911 or your child’s doctor, and make an emergency plan. (You can use the Emergency Plan form in this Mended Little HeartGuide.) Go To 62


Mended Little HeartGuide
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