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Discharge Instructions for Cystic Fibrosis

Your child has been hospitalized with cystic fibrosis. It is a hereditary disease that affects the lungs. Cystic fibrosis is an inherited long-term lung condition. It affects the body in different ways. It affects the lungs and digestive system most often. Researchers have found a defective gene that causes your body to make sticky mucus. The mucus clogs the lungs and blocks the release of enzymes from the pancreas. This may cause serious lung infections and problems with digesting and absorbing food.

There is no cure for cystic fibrosis. But there are treatments that can help your child have fewer lung infections and digestive problems and improve his or her life overall.

Preventing Infection

  • Help keep your child’s lungs clear of extra mucus. Learn how to do chest physical therapy, including postural drainage and percussion on your child to help with this. Ask your child's health care provider for instructions.

  • Remind your child to wash his or her hands often, and correctly.

    • He or she should use soap and water and a lot of rubbing.

    • Make sure you have alcohol-based hand cleaner when soap and water aren't available.

    • Teach your child to keep his or her hands away from the face. Germs often get into the nose and mouth and then into the lungs this way.

  • Ask your child's health care provider about a yearly flu shot and other vaccinations.

  • Avoid crowds, especially in the winter, when more people have colds and the flu.

Aiding Digestion

  • Learn about the special dietary needs of your child. Your child may need pancreatic enzymes to help with digestion.

  • If prescribed, make sure your child takes pancreatic enzymes exactly as instructed.

  • A nutritionist or dietician can help you and your child. Talk with your child's health care provider about a referral.

  • Some children have problems growing and gaining weight. Talk with your child's health care provider about nutritional supplements.

Other Home Care

  • Encourage your child to exercise and be physically active.

  • Your child should see his or her health care provider at least every 3 months.

  • Make sure you talk with your child about the dangers of smoking. He or she should not smoke and should stay away from others who do.

Follow-Up

Make all follow-up appointments as soon as possible after leaving the hospital. Contact your child's health care provider sooner, if you have any questions or concerns.

Ask about a Cystic Fibrosis Center nearby. These centers specialize in the care of children and adults with cystic fibrosis. You can check the Cystic Fibrosis Foundation website: http://www.cff.org. Or call 800-FIGHT CF (344-4823).

 When to Call Your Child's Health Care Provider

Call the health care provider right away if your child has any of the following:

  • Severe constipation

  • Severe diarrhea

  • Abdominal pain

  • Vomiting

  • Decreased appetite

  • More mucus than usual, or mucus that is bloody or dark in color

  • Difficulty taking part in daily activities

  • More tired than usual

  • Fever

  • Worsening shortness of breath

Since each child is different, make sure you understand when to call the health care provider about your child's specific symptoms.

 

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