A Hospital Guide For Patients with Cystic Fibrosis By Nursing Staff of 5SE

Treatment for a CF flare-up includes: o Aerosols o Chest physiotherapy (CPT) o School o IV antibiotics and other medications o Nutrition o Oxygen o Rest All these aspects of care are important to improving lung function and returning you to your normal activities. The guidelines in this booklet will help you plan an active role in your treatment and also to make your hospital stay even more worthwhile. And, you should know that patients who do not follow these guidelines should expect consequences for their actions. (If you refuse to abide by some rules, it can even result in discharge from the Hospital.) Thank you for your support. Working together with you, we promise you’ll get THE BEST during your stay here.

Avoid close contact with other CF patients. Treat each other as though each of you has a resistant bacteria. Sometimes we don’t have culture results until later in the hospitalization. Avoid sharing personal items.  Avoid sharing eating or dinking utensils or personal items like your toothbrush or nebulizer with other CF patients. Handle secretions the right way.  You should handle your own secretions when you can. Hospital staff should glove when handling secretions. Don’t spit in the sinks. Pseudomonas likes to grow in moist areas like sinks. Wear a mask when appropriate.  Wear a mask at all times while outside of your room. This is very important if you know that you carry resistant bacteria. Take care with toys.  Young children should not share toys in the waiting room of the clinic or hospital playrooms. Parents should bring toys for their small children.

Hospital Units Patients will be admitted to units based on age and availability of rooms. Patients age 14 years and older typically are admitted to the adolescent/young adult unit (5SE) Younger patients typically are admitted to the pulmonary care unit (5T) Child Life Services and School Child life therapists are employed by the Hospital to provide fun programs for all ages. Because of infection control concerns, group events with other CF patients are not allowed. You may choose to check out books, games or movies to use in your room. The Hospital also has school programs to help you stay current with your schoolwork even while you are in the Hospital.

Consideration of Others Please respect other patients and staff during your stay. Nurses’ stations and all computers are work areas for staff only. Patients should not hang out at the nurses’ stations. Keep in mind that staff members provide care to all patients on the unit; during busy times, they will respond to your requests as soon as they are able. Passes Leaving without an approved pass will result in discharge from the Hospital.

Rest Rest plays a key role in getting well. Therefore, all patients on 5T should be in their own room by 10 p.m. Patients on 5SE should be in their own room by midnight. Medications and treatments will be performed on schedule despite late bedtimes. Patients on 5SE should remain on the unit between 11 p.m. and 7 a.m. Schedules Please be in your room on time for medications, aerosols and CPT. This may require setting up CPT times with your respiratory therapist for the day. You should also schedule your exercise time with physical therapy each weekday and attend school when it is in session. You may request a written schedule.

Significant Others It is not proper to engage in intimate behavior in the Hospital. Visiting Other CF Patients Because of infection control concerns, CF patients should remain more than three feet apart in open areas. Do not visit in each other’s rooms. If two or more patients with CF are found in the lobby closer than three feet apart, the charge nurse will be informed, and the patients will lose lobby privileges for the rest of the hospitalization.

Infection Control Strict guidelines for infection control among CF patients are needed to decrease the chances of spreading resistant bacteria to each other. Here are some Contact Precautions: All CF patients should be on contact isolation while in the Hospital. This includes staff wearing gloves when in contact with patients or their environment, as well as gowns for contact such as CPT and linen changes. Practice good hand washing. The single best way to prevent the spread of bacteria is by good hand washing—after handling your secretions, after coughing and before you approach other CF patients.

To receive foods that you like, please be sure to fill out your menus everyday You must complete your menus at the breakfast meal. You may obtain cafeteria passes from the clerk on your floor. These passes allow you to go to the cafeteria and obtain any foods and drinks you would like to go with the foods served on your trays. Cafeteria passes during night shift are a privilege and may be arranged on a nightly basis if staff is available for escort to the cafeteria. If you choose to go to the cafeteria for a complete meal, please ask the clerk to cancel your food tray for that meal. If you wish, you may select 3 meals and 2 snacks per day from the cafeteria. Please ask to see your nutritionist if you would like supplements such as Scandishakes, Carnation Instant Breakfast or Boost, or if you need a list of other food choices to write on your daily menu.

Since exercise has bee shown to help with pulmonary hygiene and healing, all patients are expected to participate in PT by the third day of admission with a few exceptions. Please make sure that your doctor has written an order for this. If you attend PT three days per week, you may choose swimming, weight training, or outdoor walking for your therapy. An observed therapy session must precede these types of activities. PT will be stopped for any patient who does not attend on a regular basis. If you have a scheduled time and cannot make it, call PT at Ext and inform the therapists so they can adjust their patient time.