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 youve 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 About Your Childs Heart
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 childs 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 childs heart defect and any surgeries or procedures your son or daughter had. Research his or her heart defect using ONLY reliable resources. (Your childs doctor may provide you with some.)
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, youll take over their role, so dont 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, youll 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 childs doctor, and make an emergency plan.
Some areas have advance 911 systems that allow you to pre-register your childs medical conditions, preferences and needs with your areas 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.
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 childs 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 daughters 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 dont 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 to contact.
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.
Understand your monitoring responsibilities.
You may be asked to do monitoring at home for infants with single ventricles. A nurse or other medical professional may call your home to help you keep track of pulse oximeter and weight readings, for example.
Be sure you understand your responsibilities; know what you need to monitor and how.
Dont feel trapped in your home.
Many parents and caregivers are afraid to take a baby or child with CHD outside of the house for fear that they will be exposed to germs. During cold and flu season, it might be a good idea to limit outings with your child, but in general, getting outside and interacting with others is helpful for your mental state and your childs. Use common sense: Keep hands washed, avoid people who are sick, drink plenty of fluids, eat a balanced diet and get enough sleep. These things will help your whole family stay healthy. Talk to your doctor about immunization options that may minimize risks during cold and flu season.
Get support.
It is also natural for parents and caregivers of children with CHD to feel like they cant leave their son or daughter in anyone elses care, but you need to find ways to take brief breaks and stay healthy. Find someone you trust to babysit and take a 15-minute walk around your neighborhood once a day.
Remember, your child would not have been discharged from the hospital if he or she was not well enough to be at home. Reach out to your family, local support group, church and your states Department of Health and get support! There are resources available for you. Depression is not uncommon in caregivers. It needs to be addressed and treated. You are not alone.
Dont feel guilty when things dont go perfectly.
Sometimes you can do everything right and something will still go wrong. Your child may fail to grow or gain weight. He or she may have symptoms that need to be addressed. There is enough guilt involved in having a child with CHD; the last thing you need is to blame yourself for setbacks that may occur. You are doing the best that you can. If you feel like you cant manage, get help. Caring for a child with CHD right after surgery is scary. You may be afraid that your child will get seriously ill or even die. Its normal to feel that way.
Trust your instincts.
If you feel like there is something wrong with your child, dont doubt yourself. It is far better to check it out and find out that there is nothing wrong (even if you feel a little embarrassed) than to have something wrong with your child that isnt addressed. As a parent, you know your child best, so trust your instincts. Never feel bad about being persistent. No one advocates for a child as well as a parent.
Write it out.
Keeping a journal is a great way to work through the stress and emotional ups and down of having a child with CHD. It is also a great place for making notes about questions youd like to ask your doctors and information that you learn at your appointments.
Prepare for your childs first appointments.
If you didnt do it while your son or daughter was in the hospital, make an appointment with your childs primary pediatrician and local cardiologists when you get home from the hospital. Again, be sure you have selected a pediatrician who has experience in caring for children with CHD, who understands the need for lifelong specialized care and who is willing to work with your cardiologist. Before your childs first appointment, send any necessary medical records to the pediatrician so that he or she can better understand your childs condition and procedures. You can ask the pediatricians office staff if they are able to get the records for you or ask the hospital to send them.
Remember, your child has CHD but will also need routine care. Go to all well-baby and well-child visits recommended by your childs doctors. Write down any questions that you have before your appointments and dont be afraid to ask for clarification.
More information and forms can be found in the Mended Little HeartGuide at www.mendedlittleheartguide.org.
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