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Mended Little HeartGuide

Diagnosis 3 In The Some areas have advance 911 systems that allow you to pre-register your child’s medical conditions, preferences and needs with your area’s emergency services. Call your local fire/rescue department to find out what you can do before an emergency. You may also want your child to wear medical identification with basic information about his or her condition. Many companies make medical ID products. Talk to your cardiology team about what information should be included. Understand your equipment. You may be discharged with no equipment other than a pacifier, or you may be sent home with an order for home health to provide you with a pulse oximeter, monitor, feeding pump or even oxygen tank. Sometimes, there is equipment or other things your child used in the hospital that will be discarded because they are opened or used, and the nurse may be willing to give them to you to take home, so be sure to ask before you leave the hospital. When home health arrives, have them teach you how to use and troubleshoot your equipment. Home health companies often provide 24-hour coverage; ask how to get in touch with them after hours. Learn about medications. When your child is put on medication, find out what it does, how it works, what side effects may occur, how much he or she needs and when it should be given. (You can record this information using the Medication form in this Mended Little HeartGuide.) Plan ahead and ask for prescriptions to be arranged and possibly filled before your child is discharged. Some prescriptions need to be compounded (made into liquid), and not every pharmacy is able to do this. Get help to find out which pharmacies can manage your child’s medications. The pharmacist will explain how to store the medications properly; some need to be refrigerated. Pharmacists can help you double check the instructions you received from the discharging nurse and physician. Reach out to your primary cardiologist before discharge. Many families who have a child with CHD will need to travel to another city for their son or daughter’s surgery or procedure. If possible, before discharge, find a cardiologist close to home who can follow up with your child. If your family did not have to travel for surgery, you will still need to choose a primary cardiologist. Make sure you are comfortable with your choice and don’t be afraid to try someone different. You need to feel good about the care your child is receiving. Find a pediatrician/primary care doctor who knows how to care for children with CHD. Your child will need a primary pediatrician to manage routine care and non-cardiac issues. In most cases, you will be required to designate a pediatrician for your child after he or she is born. When selecting, ask about their experience with children who have CHD. Use a pediatrician who understands that people living with CHD need lifelong specialized care. Know who your contact person is. There is often a contact person, such as a nurse practitioner, for the cardiology practice where your child had surgery. This person can help you coordinate anything from appointments to medication refills. Be sure to find out who this person is before you leave the hospital. 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 63


Mended Little HeartGuide
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