Heart failure in children - home care

Heart failure is a condition that results when the heart is no longer able to effectively pump oxygen-rich blood to the rest of the body to meet the needs of the body's tissues and organs.

Parents and caregivers, as well as older children with heart failure, must learn to:

• Monitor and manage care of heart failure in the home setting.
• Recognize the symptoms that heart failure is getting worse.

Monitoring Your Child at Home

Home monitoring helps you and your child stay on top of your child's heart failure. Doing so can help catch problems before they get too serious. Sometimes these simple checks will remind you that your child has been drinking too much fluid or eating too much salt.

Be sure to write down the results of your child's home checks so that you can share them with your child's health care provider. You may need to keep a chart, or the doctor's office may have a "telemonitor," a device you can use to send your child's information automatically. A nurse will go over your child's home results with you in a regular phone call.

Throughout the day, watch for these signs or symptoms in your child:

• Low energy level
• Shortness of breath when doing everyday activities
• Clothes or shoes that feel tight
• Swelling in the ankles or legs
• Coughing more often or a wet cough
• Shortness of breath at night

Weighing your child will help you know if there is too much fluid in their body. You should:

• Weigh your child every morning on the same scale upon awakening. Before they eat and after they use the bathroom. Make sure your child wears similar clothing each time.
• Ask your child's provider what range their weight should stay within.
• Also call the provider if your child loses a lot of weight.

Feeding and Nutrition

Babies and infants' bodies are working extra hard because of heart failure. Infants may be too tired to drink enough breast milk or formula when feeding. So they often need extra calories to help them grow. Your child's provider may suggest a formula that has more calories packed into every ounce. You may need to keep track of how much formula is taken, and report when your child has diarrhea. Babies and infants will also need extra nutrition through a feeding tube.

Older children also may not eat enough due to a decrease in appetite. Even older children may require a feeding tube, either all of the time, just part of the day, or when weight loss occurs.

When more severe heart failure is present, your child may need to limit the amount of salt and total fluids taken in every day.

Other Self-care Tips

Your child will need to take medicines to treat heart failure. Medicines treat the symptoms and prevent heart failure from getting worse. It is very important that your child take the medicine as directed by the health care team.

These medicines:

• Help the heart muscle pump better
• Keep blood from clotting
• Open up blood vessels or slow the heart rate so the heart does not have to work as hard
• Reduce damage to the heart
• Reduce the risk of abnormal heart rhythms
• Replace potassium
• Rid the body of excess fluid and salt (sodium)

Your child should take heart failure medicines as directed. Do not allow your child to take any other drugs or herbs without first asking your child's provider about them. Common drugs that may make heart failure worse include:

• Ibuprofen (Advil, Motrin)
• Naproxen (Aleve, Naprosyn)

If your child requires oxygen at home, you will need to know how to store and use oxygen. If you are traveling, plan ahead. You will also need to learn about oxygen safety in the home.

Some children may need to limit or restrict certain activities or sports. Be sure to discuss this with the provider.

When to Call the Doctor

Contact your child's provider if your child:

• Is tired or weak.
• Feels short of breath when active or at rest.
• Has a bluish skin color around the mouth or on the lips and tongue.
• Is wheezing and having trouble breathing. This is seen more in infants.
• Has a cough that does not go away. It may be dry and hacking, or it may sound wet and bring up pink, foamy spit.
• Has swelling in the feet, ankles, or legs.
• Has gained or lost weight.
• Has pain and tenderness in the belly.
• Has a very slow or very fast pulse or heartbeat, or it is not regular.
• Has blood pressure that is lower or higher than is normal for your child.

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