Frequently Asked Questions About Hospital Stays for Patients with Cystic Fibrosis

Patients with cystic fibrosis (CF) may need to visit the hospital from time to time for testing or to address unexpected health events. Children and adolescents will be treated at our dedicated pediatric facility, The Bristol-Myers Squibb Children’s Hospital (BMSCH), while adults will be treated at the Robert Wood Johnson University Hospital (RWJUH) (main hospital). Below are some frequently asked questions to help you prepare for these occasions.

How will I be admitted to the hospital for scheduled testing and treatment?

Depending on the scheduled procedure, your CF team will work with you and the hospital to schedule and coordinate admission for either same day treatment or extended admission. You may be asked to arrive at the hospital as early as 7 a.m. but our team will do our best to work with you on timing, preparation and admission planning.

Sometimes, decisions about the need for admission happen during a clinic visit. At these times, we will work with you to determine whether or not this can be a direct admission from the clinic or if you or your family member will need to go to the emergency room.

For direct admissions after regular business hours, adult and pediatric patients should go to the main Robert Wood Johnson University Hospital (RWJUH) Emergency Department (ED) entrance at:

1 Robert Wood Johnson Place
New Brunswick, NJ 08901

If you arrive after hours, you will go through the standard ED entry process – a triage nurse will take a brief medical history, you will be given a patient ID bracelet and the on-call doctor will see you prior to assigning a room.

What if I need to go to the emergency room?

Sometimes, illness strikes quickly and you cannot wait for a clinic visit. Both the pediatric and adult programs have on-call services 24 hours per day, 7 days per week for anyone who cannot wait for normal business hours to speak to a physician.

Adults should call: (732) 235-7840
For pediatric and adolescents, call: (732) 235-7899

In some cases, a trip to the Emergency Department may be necessary. Please call the pulmonary service ahead of your arrival if you can to let us know you are on your way. We can reach out to the ED clinicians and help prepare them for your arrival and what might be needed. If you are over 21, you may be sent to the adult ED even if you are still followed in the pediatric program. As long as we know you are coming, your primary pulmonologist will make sure you are admitted under the correct services. Be sure to inform the clinicians in the ED that you have CF and should be in contact isolation while in the ED.

Will I receive a PICC line?

Yes, a peripherally inserted central catheter (PICC line) will most likely need to be inserted into your arm to administer some of the intravenous (IV) antibiotics. A PICC line enables medical staff to administer various treatments through one access line. More than one antibiotic can be given at once, for example. Large volumes of fluid can be administered. Some blood draws can be done through the same line.

If you will be receiving sedation for the PICC line, you must fast for 8 hours before the procedure (no eating OR drinking even water). Plan your eating schedule accordingly prior to arriving to the hospital.

Often, patients with CF will go home with the PICC line in place to complete their IV therapy there. We will work with the home care company to manage your medications and maintain your PICC line. Weekly blood draws will also be done at home and sent to our office. Your nurse will work closely with you in these situations to help you manage your care at home.

How does the hospital maintain contact isolation?

CF patients will have private rooms and will be on contact isolation, which means that once admitted into your main room all hospital staff (doctors, nurses and pulmonary staff) should wear blue gown and gloves. Respiratory therapists should also wear masks while doing CPT. This also means that CF patients are not permitted in the playroom or the teen room. Any time a patient leaves the room, they must wash their hands and wear a mask.

Can I keep enzymes in my room?

Discuss this option with your nurse. We recommend that you bring an extra bottle of enzymes with you in case they are not readily available when you want to eat.

When do doctors do rounds?

Doctors in the hospital start their rounds at 6 a.m. Other doctors may visit throughout the day.

What are respiratory treatments like in the hospital?

Nebulizer treatments and chest physiotherapy (PT) will be administered four times a day. If you are sleeping, you will be woken up. You must be an active participant in your therapy whether at home or in the hospital. We do try to schedule treatments during waking hours so most treatments will be completed between 8 a.m. and 10 p.m. unless otherwise arranged. Pulmonary function tests (PFTs) may be done before you are given antibiotics and then up to twice more before you leave. Spirometry will be done once a week. This should be done with your morning treatment and can be done in the lab or your room. Your care team will advise you when PFTs will be scheduled.

How are food and nutrition handled in the hospital?

All meals are provided by the hospital. A nutritionist will meet with you on the first day of hospitalization. Snacks may be ordered after that meeting. If you do not see a nutritionist the first day, be sure to tell your nurse or physician. Snacks usually arrive around the same time every day. Meals are ordered through room service from 6:30 a.m. to 8 p.m. Monday through Friday, and 6:30 a.m. to 6:30 p.m. on the weekends. CF patients are usually placed on high calorie, high salt diets with few restrictions, snacks and double portions. Kosher menus and other diet specific menus are also available.

What amenities are available?

In the adult hospital use of TVs in the rooms are free. There is a computer in the solarium that you are welcome to use. The pediatric rooms are equipped with a TV, Xbox and a DVD player. Child Life specialists can visit pediatric patients’ rooms to assist with exercise and bring additional games or toys. You can bring your laptop or iPad with you to the hospital. If you don’t have one and would like to use one, they may be available through Child Life services. WiFi in the hospital is free to all patients and visitors throughout your stay. There are laundry facilities for family members at BMSCH.

What should I bring to the hospital for an extended stay?

Here’s a list of things to bring to the hospital to make your stay more comfortable:

  • Clothing – comfortable, loose clothing, pajamas, short sleeve shirts, socks, slippers
  • Toiletries
  • Enzymes (it usually takes a day or so before enzymes are ordered to suit your needs)
  • Any home medications that are not on formulary in the hospital ONLY if you do not want to switch during your admission
  • Electronics cell phone, laptop (wireless connection available), iPad, headphones, handheld video games, etc.

Pediatric patients should bring:

  • Favorite toys, blankets and stuffed animals
  • Appropriate activities and games, books and puzzles

Where can visitors eat?

Visitors and parents of pediatric patients can request a meal pass from the nursing staff that provides a discount for the main dining hall of hospital. The Safari Café near the lobby of The Bristol-Myers Squibb Children’s Hospital offers ready-to-go foods. There is also a Starbucks in the atrium of the main hospital that is open to the public daily. In addition, there are many excellent restaurants around New Brunswick.

Can my family stay in the room with me?

Parents of pediatric patients are welcome to stay in the room with the patient. Pediatric and adolescent rooms have a daybed and bed linens will be provided to you. In the adult hospital, only one family member is allowed to spend the night. There is a recliner chair in the room. Hospital blankets and pillows will be provided, but you may also bring your own from home.

Can my pet visit me?

Pets are allowed to visit you during regular visiting hours in the hospital. All pets must be up to date on all shots and vaccinations and you should discuss your desire for your pet to visit with your nurse ahead of time. You MUST show security this paperwork BEFORE the pet arrives at the hospital. Notify the head nurse, who can get the process started for you.

Is there a laundry room available?

There is a laundry room available at BMSCH. Please bring appropriate detergents if you would like to use the facilities. There is no laundry facility in the adult hospital.

Can siblings visit?

Please consult our Visitation Guidelines for our most current policies. Please note that siblings are welcome to stay at the Ronald McDonald House. However, due to its size, this is often not available to families who don’t have the luxury of time for planning an admission.

Can my family stay in the Ronald McDonald House?

The Ronald McDonald House in New Brunswick is just across the street from the main hospital at 145 Somerset Street, New Brunswick, NJ 08901. It offers a place for families to call home so they can stay close by their hospitalized child at little to no cost, and includes amenities including sleeping and eating arrangements. There are six rooms available with at least three bedrooms in each. Families must live outside a 10-mile radius from the New Brunswick house to be eligible to stay.

Please call the CF social worker assigned to you directly for assistance if you have never stayed at Ronald McDonald House before. If you have previously stayed, feel free to call (732) 249-1222 when you learn of your need for admission. If a room is available, the staff at Ronald McDonald house will need a referral to be completed by a current CF social worker. Visit the Ronald McDonald House of Central New Jersey website for more detailed information.

How can I keep up with schoolwork while in the hospital?

Please let the CF center social worker know if you are a student and need anything for school. We can communicate regularly with your school -- even if you are in college or graduate school. We can make arrangements to have your work sent to the hospital, get work deadlines extended and request additional help to complete assignments upon your return.

Our CF Center has developed a partnership with the Embrace Kids Foundation, which can help with tutoring as well as other services including setting up a buddy group for a pediatric patient, financial services, and much more. Visit the Embrace Kids Foundation website for more information and talk to the CF social worker if you would like to get involved with this group.

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