Conditions We Treat

Our nationally accredited cystic fibrosis care center is here for you and your child with cystic fibrosis. Our pediatric lung specialists and multidisciplinary team members have promising, proven methods and therapies to help slow the progression of this condition. Through diagnostic and therapeutic management, we’ll help you improve and maintain your child's health.

We offer several cystic fibrosis multispecialty clinics, including:

• Newborn cystic fibrosis screen clinic
• Infant cystic fibrosis clinic
• Pediatric cystic fibrosis clinic
• Cystic fibrosis transition clinic, to help teens become more independent as they approach high school graduation

Our adult pulmonary providers offer an adult cystic fibrosis clinic, so individuals can transition seamlessly and continue to receive lifelong specialized care.

A lot goes into living with cystic fibrosis, sometimes called the salty life, since the condition causes people to have extra salty skin. Hear all about it from our patients and cystic fibrosis care center staff.

Children with cystic fibrosis at times require a “tune up” for pulmonary exacerbations and are admitted to the hospital for intravenous antibiotics. Cystic fibrosis inpatient care involves a multidisciplinary team, including our pediatric pulmonologists, nursing, respiratory therapy, dietitians, social work, child life, physical therapy and other medical specialties as needed. The child and family are considered an important part of the care team and are involved in medical decision making. Parents are welcome to stay at the bedside or onsite at the Renucci Hospitality House.

In accordance with infection control and prevention guidelines, and for the safety of the patient, contact precautions are in place while in the hospital. What this means for patients in the hospital:

• All staff entering a patient room must wear an isolation gown and gloves, similar to our outpatient cystic fibrosis clinic.
  • Healthy visitors are welcome to visit during contact precautions and do not need to wear isolation gowns.
• Patients may not leave their hospital room unless escorted or approved by a hospital staff member. There will be scheduled times out of the room with visits to the playrooms, music room and other fun places. Patients may not go to the cafeteria, lobby, gift shops or other common areas to protect themselves and other cystic fibrosis patients that may visit those areas.
• Child life is able provide crafts and activities to help make the stay more fun, and families are encouraged to bring favorites from home as well.
• Prior to leaving their room, cystic fibrosis patients must put on a clean gown, wash their hands and wear a mask. This is for their protection as there are often multiple cystic fibrosis patients in the hospital at the same time.
• To make an inpatient stay more comfortable, patients and their families may want to bring bedding, pillows or even decorations from home. Gaming systems are also welcome, as well as laptops to work on homework during the hospital stay. There is a refrigerator in the room for favorite foods or snacks from home, if desired.

Our pediatric pulmonary doctors are experts in cystic fibrosis, and our multidisciplinary consultative clinic is accredited by, and a member of, the national Cystic Fibrosis Foundation. This links our center with the latest knowledge and most current treatments for cystic fibrosis. Our multidisciplinary team of expert physicians, advanced practice providers, nurses, dietitians, respiratory therapists, medical social workers, psychologists, genetic counselors and child life specialists work together every week to review cases, revise care plans and educate our families on the best way to care for themselves.

Until a cure arrives, we explore every treatment option to determine the best plan for your child’s health. As a Therapeutic Development Network Center designated by the Cystic Fibrosis Foundation to do specialty research, we bring state-of-the-art research and new therapies right to our local cystic fibrosis community.

We a proud to have a family advisory council, consisting of several parents whose children receive care from our team. The council shares the patient and family perspective, informing clinic decisions and guiding our team's quality improvement work, with the goal of providing the highest quality care to all patients and families.

Our goal is to provide the best care possible for our patients with CF, including preparing them for adulthood.

As your child begins adolescence, you and your child should start preparing for the transition to adult life. As it does for all adolescents, this transition focuses on independence. For people with CF, this means being able to care for themselves. While the providers at the CF center are always here to help, your child should graduate high school with the ability to manage his/her own care. That should include things like taking medicines, calling for refills and calling the clinic without prompting when sick. We will be discussing these topics further during the transition process. We will all work together to get your child ready one step at a time and make his/her transition to self-care as smooth as possible.

One of the ways we will help your child to take charge of his/her health is having the child meet with his/her providers and nurses independently of his/her parents. At 13 years of age, your child will be asked to complete PFTs and come back to the exam room while his/her parents remain in the waiting room. Your child will discuss his/her current medication regimen, therapies, symptoms and general concerns and have a physical exam. Once your child and the providers have discussed the plan, the nurse will invite the parents into the room to recap as a family with the provider. We understand that this step could be scary for both the child and parents; however, the most important thing to remember is that you, the parents, are always included. We realize that sick visits can be more anxiety provoking; therefore, we allow the parents back initially in that circumstance.

Our goal is to help your child develop the necessary skills to manage his/her CF. This way, your child will be better prepared to move on in all aspects of life and enjoy a happy, healthy independent life. If you have any questions, please contact the office at 616.267.2200 or discuss them with the CF team at your next visit.