Your Child's Cystic Fibrosis Center Visit
During each of your child's visits to the Cystic Fibrosis Center, your child may be evaluated and treated by a number of experts, including:
During CF office hours, the staff attending physician reviews the status of your child with members of the healthcare team, and together with you and the team, develops goals for future care.
During periods of hospitalization, the inpatient service attending physician will determine the medical management of your child. The attending rotates on a monthly basis. There are weekly meetings of the entire Pulmonary team to discuss and plan the inpatient care.
Advanced practice nurses
During CF office hours, the nurse practitioner reviews the status of your child with members of the healthcare team and together with you and the team develops goals for future care. When patients at home have medical or nursing questions, the calls will frequently be answered by nurse practitioners between 9 a.m. and 4:30 p.m. Nurse practitioners along with the attending physician are also responsible for coordinating the inpatient care during hospitalization.
The pulmonary fellow is assigned to provide primary CF care, with the attending physician, for patients during CF office hours for the three year period of fellowship training. Additionally, the fellows rotate monthly on the inpatient unit to provide care when the child is hospitalized on evenings, nights and weekends.
Outpatient medical care for emergencies on evenings, nights and weekends is provided by the outpatient fellow on-call in conjunction with the attending physician. The fellow responds to phone calls during this time and also provides direction to the emergency room staff if your child is seen there.
The pediatric resident provides daily medical care on an inpatient basis as directed by the Pulmonary Team.
The office nurse is a registered or licensed practical nurse who coordinates the care activities during the outpatient visit. He or she handles obtaining and recording height and weight, administering injections, teaching proper use of inhalers, and making arrangements for special testing during clinic, are examples of responsibilities of the office nurse.
The primary nurse is the registered nurse responsible for coordinating and planning your child's care during the hospital stay. A team of nurses on the inpatient units works closely with the primary nurse while providing care for your child.
The physical therapist's (PT) role in the Cystic Fibrosis Center includes teaching chest physical therapy (CPT) and alternative breathing techniques to children and their families. These techniques are reviewed annually. Also, the PT assists in obtaining equipment related to CPT (e.g., wedges, mechanical percussors, vest).
During hospitalizations the PT evaluates exercise tolerance and develops a program suitable to the child's physical and medical needs as well as interest. Generally, a child will be seen three times a week for exercise including general stretching and warm-up, aerobic activity (chosen by the child) and cool down/breathing exercises.
The social worker has completed graduate school and received a Master's degree in Social Work (MSW). The social worker is experienced and knowledgeable in how chronic illness impacts the individual, family and other systems including school and peers. She is available to provide emotional support and assist in coping with the stress of a chronic illness. Additionally, the social worker has information regarding hospital and community resources to provide services to support family functioning.
The role of the nutritionist is to help parents master skills which will assist the child in achieving optimal growth through good nutrition. This is accomplished through regular monitoring of height, weight, and food intake; assessment of enzyme replacement therapy, vitamin and other supplementation.
Information is provided about proper nutrition and ideas on how it can be modified to help children with CF eat a diet, which is appropriate for their age and physical needs. The child's food preferences, family's eating habits, cultural background and financial situation are taken into account in treatment recommendations.
Pulmonary function technologist
The pulmonary function technologist (PF tech) is proficient in performing all pulmonary function studies. The key roles of the PF tech are to gain the cooperation of the child by explaining the proper way to perform maneuvers, to coach the child during each maneuver to maximize the best effort, and to select and report the most accurate testing trial to the medical team. PF techs also teach and review proper inhaler and spacer technique during testing.
Child life specialist
During an inpatient stay, the child life programs offer opportunities to play, learn, and interact with others in an emotionally and physically safe environment. These activities help to reduce stress, increase coping skills, and enhance developmental growth through learning and mastery of the healthcare experience. In addition, the child life specialists prepare patients and families for procedures by reviewing and teaching coping and relaxation techniques.
Certified teachers work together with your child's school to provide instruction and educational support during hospitalizations. The Hospital School Program is designed to help children keep up with schoolwork and make the transition from hospital back to school as smooth as possible.
The clinical pharmacologist reviews your child's medication profile (both outpatient and inpatient) to check for correct dosages and to identify potential drug allergies or drug interactions. The pharmacologist also reviews antibiotic blood levels and makes dosing recommendations based upon the levels. The pharmacologist is available during office hours to answer questions about medications from the patients, parents, nurses and physicians. In addition, the pharmacologist assists in clinical drug trials conducted at the CF Center.