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Hospital Guide

Overview

Having CF is not easy, nor is being in the hospital.  Being in the hospital can be very difficult on you and your family.  There are many things you will learn along the way, this is just a quick guide to aid you in the process of being admitted to the hospital.  For more detailed information please see the links at the bottom of this page for the adult and pediatric patient guides.

THINGS TO KNOW

You can expect that you/your child will be hospitalized anywhere between 7 and 14 days depending on their symptoms. Please plan accordingly.

The Emergency Room

Sometimes, illness strikes quickly and you cannot wait for a clinic visit.  Both the pediatric and adult programs have an 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. In some cases, the emergency room is necessary.  When this happens, please make sure to call the pulmonary service ahead of time to let us know you are on your way. We can reach out to the emergency room clinicians and help prepare them for your arrival and what might be needed.  Please be advised that if you are over 21, you may be sent to the adult ER even if you are still followed in the pediatric program.  As long as we know you are coming, your primary pulmonlogist will make sure you are admitted under the correct services.

 

It is also important to inform the clinicians in the ER that you have CF and should be in contact isolation while in the ER. Wait times can be long even within the emergency room so contact isolation is important.

 

Admitting

If you are admitted during normal work hours (9am to 5pm) you will be admitted into the hospital through the clinic. Should you arrive at the hospital after normal hours, you will need to be admitted through the Emergency Room in the Main Hospital. One of the clinic staff will make the ER staff aware that you will be arriving. You will go through the ER process as if you are a “regular patient”. Meaning you will need to see a triage nurse to go through a brief medical history, you will be given a patient ID bracelet and you will be seen by the on-call ER doctor prior to being given a main room.

PICC Lines

Please be aware that a PICC line will need to be inserted into your [child’s] arm to administer some of the IV antibiotics. Not all blood draws can be done through the PICC line.  If you will be receiving sedation for the picc line, you must be fasting for 8 hours before the procedure (no eating OR drinking - even water).  Plan your eating schedule accordingly prior to arriving to the hospital.  Please click here for more information on PICC lines.

Often, our patients will go home to complete your IV therapy.  When this happens, 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.

 

Contact Isolation

You/your child will have a private room and will be on contact isolation which means once admitted into your main room all hospital staff (doctors, nurses and pulmonary staff) should wear blue gown & gloves prior to entering you/your child’s room.  This also means that CF patients are not permitted in the play room or the teen room.  Any time you/your child leaves the room, you must wash your hands and wear a mask.  This is for the protection of other patients as well as your [child’s] protection.

Enzymes

Enzymes can be kept in your room for convenience as CF patients will need to eat three meals and three snacks every day.

DAILY SCHEDULE

Rounds

Inpatient rounds start at 6am (visits from the doctor or other medical professionals) by the attending, or for the adults the Fellow (a fellow is a DR studying to become an attending).  Inpatient CFRD screenings will occur for all CF patients 10 or older.  Depending on other issues you/your child may have, other doctors may visit throughout the day (i.e. Endocrinologist, hematologist).

Respiratory Treatments

Nebulizer treatments and chest PT will occur 4 times a day.  One treatment may occur while you are sleeping (either early in the morning or in the evening).  If sleeping you will be woken.  You need to be an active participant in your therapy whether at home or in the hospital.  Please remember, whether you are in the hospital or on home IVs, we always recommend treatment four times daily while on IVs for maximum benefit.

PFTs

PFTs may be done prior to 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, whichever you prefer.  Please remember transportation can take up to 1 hour.

Meals & Snacks

Your [child’s] snacks are ordered after meeting with the nutritionist.  (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 6:30AM-8PM Monday through Friday and 6:30AM-6:30PM on the weekends.

Activities & Exercise

The pediatric rooms are equipped with a TV, XBOX, and a DVD player.  Child Life Specialists can visit the room to assist with exercise; they can also bring additional games or toys, however supplies are limited and are only available for one day at a time. (PLEASE NOTE: this option is not available in the adult hospital.)  In the adult hospital you will be required to pay a daily rate for the phone and TV.  Calls from the hospital phone can make and receive calls from within the hospital. (i.e. To room service without renting the phone. There is a computer in the solarium that you are welcome to use.)

 

To hear from families about their experiences and advice about hospitalization, click on the links below:

 

Hospital Tips from a mom

 

The Hospital Experience - A Family's story

WHAT TO BRING

Clothing

Toiletries

Enzymes (this usually takes a day or so before it is ordered to suit you/your child‘s needs.)

Electronics - Cell Phone, Laptop (wireless connection available), handheld video games, etc.

Child’s favorite toys, blankets, stuffed animals, pillows, etc.

Activities appropriate for your child – (i.e. books, DVD’s, puzzles, etc.)

ACCOMODATIONS

Parking

Is available at the main hospital parking lot. Parking is free the day of admission and will cost $2 per day if validated for 1 family member by the receptionist at the information desk.  Patients admitted for more than 14 days will get a pass for free parking.  PLEASE NOTE: Parking tickets MUST be validated to get the reduced rate.  Parking rules change, when in doubt, ask, someone might be feeling lenient.

Food

All of your child’s meals are provided by the hospital. Parents and visitors are able to request a meal pass from the nursing staff that provides an employee discount in the main dining hall of the hospital.  There are also dining facilities in the hospital as well as many excellent restaurants around New Brunswick.

Sleeping Arrangements

In the pediatric hospital, parents are welcome to stay in the room with the patient.  Usually the rooms have a couch and recliner chair. In the adult hospital, spouse or family member (only 1 per night) are allowed to spend the night. You must recliner.  Hospital blankets and pillows will be provided, you may also bring your own from home.

Pets

Pets are allowed to visit you during regular visiting hours in the hospital.  Pets may not go up to the patient‘s room. All pets must be up to date on all shots and vaccinations.  Security MUST have the paperwork BEFORE the pet arrives at the hospital.  DO NOT bring them together, it will not work out well for you.  Notify the head nurse and s/he can get the process started for you.  NOTE: this may differ in the children’s hospital.

Laundry

There is a laundry room available in the children’s hospital. Please bring appropriate detergents if you would like to use the facilities. NOTE: this is not available in the adult hospital

Siblings

Siblings are welcome to visit. However siblings under the age of 18 are not permitted to sleep in the room. This policy can change during FLU season.  Please call ahead during flu season to check visitors policy for children.  Please make appropriate child care arrangements. Please note that siblings are welcome to stay at the Ronald McDonald House (see info below).

School Work

Please let the CF center social worker know if your child needs anything for school, letters, tutoring services, etc.  We work with a foundation that can help to provide tutoring services during your stay and we regularly communicate with your school (Even if you are in college or graduate school).  Arrangements can be made to have your child’s work sent to the hospital.

IMPORTANT LINKS

Robert Wood Johnson has a patient guide for the adult hospital.  It can be found via web at:

patient-guide-at-new-brunswick-campus

 

Click on link below for patient guide for Bristol Myers Squibb Children's Hospital. It was recently updated and full of information.

Patient Guide - The Bristol-Myers Squibb Children's Hospital at Robert Wood Johnson University Hospital

Ronald McDonald House

There is a Ronald McDonald House in New Brunswick, across the street from the main hospital. The house is able to assist family with many amenities including additional sleeping and eating arrangements, however space is limited to six rooms.  Families must outside a 10 mile radius from the New Brunswick house to be eligible to stay. Please call (732)249-1222 upon knowing of your need for admittance. IF a room is available, the staff at Ronald McDonald house will need a referral to be completed by current CF social worker.  You can visit their website for more detailed information at www.rmh-cnj.org/house-newbrunswick

Embrace Kids Foundation

Our CF Center has developed a partnership with a wonderful organization that has been working with patients and families at RWJUH for several years.  Embrace Kids Foundation is a non-profit organization originally established to help children living with Cancer and blood disorders.  However, they have broadened their scope and have offered  a great deal of support to our pediatric patients and families.  They can help with tutoring, visiting during your stay, setting up a buddy group for your child, and much more.  Click on the above link for more information and talk to the social worker if you would like to get involved with this group.