The S.S. La Rabida Information Guide A Handbook for Patients and Families
Table of Contents Sailing with Us Meet Our Crew Parents/Guardians/Caregivers are an Important Part of Our Crew Visit Guidelines Accommondations Dining Options for You and Guests Aid and Resources Health and Safety: A Shared Responsibility Nearby Conveniences Your Child’s Right Preparing to Go Home Patient Feedback and Medical Ethics Driving Directions Transportation Options and Parking My Child’s Crew Members Contact Directory
Welcome Ab o a rd ! La Rabida Children’s Hospital welcomes you. And, we thank you for entrusting us with your child’s care. I encourage you to review this handbook to prepare you and your child for an important journey aboard the S.S. LaRabida, our 49-bed inpatient unit, designed like a cruise ship, portholes and all. Our crew of clinicians, support staff, and volunteers honors your child as a VIP passenger. Throughout the voyage, your child will receive the finest medical care, therapy and special services available. We encourage you to participate in the care of your hospitalized child whenever possible. You’re invited to spend the night and share meals with your child. Your involvement will ease the away-from-home stress your child feels while in the hospital and raise your confidence in how to support your child’s care. The S.S. La Rabida features spacious cabins as patient rooms. Children who are able convene for play and meals on one of our “sundecks.” Although your child may be ill, we hope the child-friendly atmosphere will help make your/his/or her stay here a bit easier. We will do our best to make your child’s stay as comfortable as possible. If you have questions or concerns, please do not hesitate to ask a member of our crew. Sincerely,
Paula Kienberger Jaudes President and CEO La Rabida Children’s Hospital
Sailing with us Whether this is your child’s first sail on the S. S. La Rabida or one of many, the experience can be stressful for the entire family. Parents play an important role in helping their child adjust and feel comfortable.
What to Bring from Home To help your child adapt to new surroundings, and personalize your child’s cabin, consider bringing a few items from home, like family pictures, your child’s drawings, favorite pillow, blanket or washable toy. Clothing should be marked with your child’s name. Also bring to the hospital, equipment and information needed for your child’s care, such as • Any special equipment for example, wheelchairs, splints and/or braces • A list of medications • Immunization (shot) records • Insurance information Please do not bring clothing or toys of great value, stuffed toys, flowers, plants, or latex balloons. La Rabida does its best to protect guest’s property, but it is unable to replace lost or stolen items. Please keep this in mind when bringing belongings to the hospital.
Play Areas and Activities Play areas on the S.S. La Rabida are open throughout the day and equipped with toys and games. You are welcome to take your child into play areas at any time with permission from a Nursing Crew member: • North Deck Play Area • The Sun Deck adjacent to the Nursing Station • The playroom for smaller children on the unit • South Deck Play Area • Sun Deck adjacent to the Nursing Station
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All play areas are designated “procedure free zones” for your child, meaning that no medical procedures will be allowed. If your child is unable to leave the cabin (patient’s room), ask a member of the Child Life or Nursing crew to bring age appropriate toys to your child.
Child Life Program
Children need to play even when they are in the hospital. Play is something children know so it helps bridge the gap between hospital and home, and helps patients learn about the hospital and what they will experience here. The Child Life Program is designed to meet the needs of every patient by helping to reduce stress and anxiety associated with the hospital experience. The Child Life staff spends time with your child and plans activities appropriate for your child’s condition and mobility. You are invited to join your child during these activities.
Burton J. Grossman Children’s Pavilion
The pavilion is a very special place for children. Here your child gets a break from the routine of hospital care. The pavilion features an arts and crafts area, video game room, classroom with computers, and an infant play area. If your child can leave his/her room, he/ she can come to the pavilion to play. You are welcome to come to the Pavilion with your child during the following times:
Child Life Group Hours
Monday – Friday 9:30 a.m. to 11:30 a.m. for school 2 p.m. to 4 p.m. 6 p.m. to 8 p.m. Saturday 10 a.m. to 12 noon 2 p.m. to 4 p.m.
The Playground
The lakeside garden playground offers a variety of play structures, benches, and picnic tables for you and your child to enjoy the beautiful outdoors. You may take your child to the playground when you receive the approval of your doctor.
your child stays on track with current school assignments. La Rabida has a Child Life Education Specialist on staff who provides school/ educational instruction for all patients, especially those who are not eligible for the Home/Hospital Program (see below). Your school age child will attend school when able and not scheduled for a hospital appointment. Class is held in the Children’s Pavilion every morning year round.
The Chicago Public Schools Home/Hospital Program This program provides a teacher to work with patients who are confined to home or hospital for any medical reason for at least 10 school days. The patient must be in a Chicago Public School to receive this service. The teacher works closely with parents, school, and hospital staff during the time the patient is away from school. Please call the CPS Home/Hospital Program at 773.553.1875 or 773.553.1878 for more details.
The Playground Hours
May - September, 8:30 am until dusk.
Educational Services Please notify your child’s school of the approximate length of your child’s hospital stay. We encourage you to ask your child’s teacher to provide you with schoolwork for your child. This will help to ensure that
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Your Child’s Spiritual Needs You and your child’s spiritual needs are very important to us. Your clergy may visit during your child’s hospital stay. Special arrangements for worship services or fulfillment of other spiritual needs may be arranged through your child’s nurse or case manager. A Pastoral Care volunteer is available and can be contacted through the Patient Representative at 773.256.5759 or Volunteer Office at 773.256.8985.
opportunity for children who do not eat by mouth to interact with other children and benefit from the sight, sounds, and smells during a fun activity.
Emotional Support La Rabida Behavioral Sciences staff is available to provide psychological assessment, advocacy services, and counseling services to your child and family. To inquire about available services, call the Behavioral Sciences Department at 773.363.6700, extension 5721.
Pain Management Children entering the hospital may have pain. With proper pain management, we can help to make your child more comfortable. La Rabida Children’s Hospital makes pain assessment and management a priority. Many factors influence your child’s response to pain, including previous experience with pain, age, and level of development. Since your child’s pain is unique, getting to know your child is an important step in managing discomfort.
Lunch Bunch Lunch Bunch is a mealtime group offered on the Sun Deck for children with therapeutic needs involved with feeding. Members of the Developmental and Rehabilitative crew and specially trained volunteers oversee the group. Lunch Bunch allows children of various ages and abilities to socialize in a group setting as well as work on their eating, self feeding, and communication goals. It is also a great
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Pain relief is an important part of your child’s treatment plan and we encourage patients and families to be involved. Together, we can develop a plan that will keep your child as comfortable as possible. You can help us by discussing your child’s pain history with the Nurse and Physician: • Explain what medications or techniques have or have not worked in the past • Explain the side effects your child has experienced with specific medications • Describe the type of pain your child typically experiences and for how long
In addition, continue to learn as much as you can about any pain medication that is prescribed for your child along with its side effects. There are ways to make your child comfortable that do not require medication. Ask your child’s Nurse or Child Life Specialist for ideas, which may include: • Rocking and holding your child • Applying hot or cold packs • Using music, stories, videos to distract your child; and techniques that help your child relax. Help the doctors and nurses measure pain. The clinical team may ask your child to choose a face on a scale that best describes the degree of pain. For children who are not able to use the pain scale, the clinical team will rely on your judgment of your child’s level of pain and on their observations.
Room Mate Do’s and Don’ts
Do
Don’t
• Feel free to speak to other children • Call a nurse if another patient needs something or if their machine is beeping • Respect the privacy of other passengers and their family • Touch other patients • Use other patients’ items such as toothbrushes, combs, soap, or clothes • Touch equipment in the room unless it is part of your training
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M e e t O ur C r ew Helping children with chronic illnesses live full, productive lives is our primary goal. Because most lifelong medical conditions are complicated, La Rabida uses a team approach to ensure the best possible inpatient and outpatient care for each child. You and your child will be cared for by crew (staff) members throughout your journey on the S.S. La Rabida, from arrival through departure. We want to acquaint you with the roles and responsibilities of our many crew members. All are here to promote your child’s health and well-being and help you understand your child’s medical requirements.
Pre-boarding (Admission) The Admission Coordinator may visit your child before a transfer to La Rabida and likely will orient you to the hospital, assist with admission information, and verify insurance coverage.
While on board The Physician Crew
Your child’s team of physicians will include the Attending Physician, the doctor in charge of and responsible for your child’s care, and other doctors who work closely with the Attending Physician, including: 1. The hospitalist, the physician who is monitoring your child’s care throughout the evening and night. 2. Consulting physician, a doctor with expertise in a particular area. This doctor may be asked by your Attending Physician to help diagnose and treat your child. 3. Fellow, a fully trained Pediatrician who is receiving additional training in a pediatric specialty. 4. Resident physicians, doctors who are training in chronic care at our hospital. The resident reports to the attending physician on your child’s progress every day.
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Students in medical school also participate as part of the medical team under the supervision of physicians.
The Nursing Crew
The Nursing Staff is very involved in your child’s care throughout each day. The Nurse Manager supervises the inpatient unit. You may discuss any aspect of nursing care, your child’s comfort, and/or hospital services with the Nurse Manager. The Nurse Team Leader and charge Nurses assist the Nurse Manager in daily operations of the unit. The ANC (Administrative Nursing Coordinator) is the offshift (evenings, nights and weekends) hospital supervisor and is also available if you need assistance.
A Physical Therapist evaluates and assesses movement capabilities and then provides appropriate therapy programs, recommending any special equipment needs, with the goal of restoring function to the greatest extent possible. An Occupational Therapist uses play activities and diagnostic tools to assess your child’s ability to manipulate objects and perform self-help tasks such as dressing, bathing and other age appropriate activities.
Our Nursing staff includes: • Nurse Practitioners who are registered nurses with additional education and clinical training in a specific area. These nurses work in both the inpatient and outpatient areas to perform physical exams and procedures, order lab tests and provide care education to patients and their parents. • Registered Nurses (RNs) who are responsible for planning, organizing, and delivering nursing care. • Licensed Practical Nurse (LPNs) who deliver direct and indirect care to patients. • Certified Nursing Assistant (CNAs) who perform various duties to assist staff nurses in the provision of care to patients.
Additional Crew Members
Your child’s care may also include one or more health care professionals with specialized training. The Respiratory Therapist evaluates and treats patients with breathing problems and addresses needs relating to breathing treatments, ventilators, tracheotomies, and oxygen utilization.
The Speech Therapist provides therapy to enhance your child’s oral motor skills, eating and self-feeding skills, and ability to understand and use language to communicate with others. An Infant Development Specialist assesses the cognitive, social, and emotional skills of children ages zero to three whose development is potentially delayed. The Dietician is a nutrition expert who evaluates and modifies your child’s eating plans and provides education on any special dietary needs and/or diet changes that will promote the health of your child. A Phlebotomist draws your child’s blood for lab work when needed for treatment.
Unit Staff
The Unit Secretaries are responsible for assisting the S.S. La Rabida staff with daily operations.
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Family Services Crew
A variety of crew members will work closely with you and/or your child for the purpose of addressing needs beyond your child’s medical care. The Child Life Specialist is a child development expert who addresses educational, social and emotional needs of hospitalized children. For your child, the Child Life Specialist will plan age-appropriate arts and craft activities, coordinate play programs, and consult with the on-site Chicago Public School teacher to identify tutoring needs. The Patient Representative -- your advocate and your designated person who has responsibility for facilitating communication, collaboration and coordination between hospital staff -- he/she will answer questions, address your concerns, and explain La Rabida policies and services.
Psychologists and other mental health professionals are available to provide services to your child and family to help with adjustment to diagnosis, coping with hospitalization, managing medical procedures, and other emotional and pshychological needs that may arise.
Volunteers
Adult and student volunteers are special members of the La Rabida crew. Volunteers fill many special roles at La Rabida and are an important part of the safe nurturing environment that we want to provide for our passengers (patients). Volunteers wear blue smocks over their clothing and are available to spend time with your child at bedside or on the Sun Deck. Please ask them for help if needed.
Case Management Crew
The La Rabida Case Management crew, which includes social workers, nurses and advanced practice nurses, can help with plans to take your child home, provide family support and connect you to financial help or community resources. Your child’s case manager can be reached by calling 773.363.6700, extension 8659. A Case Manager, either a registered nurse or social worker, will coach you on your child’s care requirements and help you make plans for your child’s at-home care. The Social Worker is trained to help patients and family members deal with financial, social, and emotional needs that relate to illness or hospitalization. Social Workers can link your family with community programs and provide resources for your family.
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Each crew member is specially trained to perform their role and attend to the well-being of your child.
Parents/Guardian s a r e a n I m p o r t a n t / C a r e g i v e rs Par t of O u r C r ew La Rabida Children’s Hospital welcomes parents, guardians, and caregivers and encourages their participation in their child’s day-to-day hospital routine as partners in their child’s care. Parents and guardians have open 24 hour visitation to their child and are welcome at all times.
Overnight Stays Each passenger cabin (room) can accommodate an overnight stay of one parent, guardian or one of the child’s primary caregivers. The window seat or couch easily converts into a bed. If the cabin is a two patient room, the off-shift supervisor-ANC will speak with the parents, guardians or caregivers between 8 p.m. and 9 p.m. to determine who will overnight in the cabin. Hospital Security will issue an overnight pass to those who plan to spend the night which must be worn whenever the parent, guardian or caregiver is outside of their child’s cabin (room). The pass will list the child’s cabin number and bed number. Sleeping on the floor is not allowed and we discourage your sleeping with your child in one bed. Staff must have easy access to a patient at all times and your child will require a good rest each night. When staying overnight, please bring proper sleepwear. For example, pajamas, a robe and slippers. We kindly request that you rise and shine by 7 a.m., when your child’s morning care begins, and return the bed into a window seat or couch at this time.
Please note the following: A parent, guardian or caregiver may designate an adult relative to spend the night. However, the relative must be 18 years of age or older.
Special Circumstances • During “supervised visits” (e.g. Department of Child and Family Services (DCFS) mandated supervision), identification is mandatory. Visit time and duration must be prearranged with your Case Manager or the unit nurse and DCFS, and a staff member or DCFS Worker must accompany the visitor. • Parents, guardians and caregivers who are visiting and have colds or respiratory symptoms should wear a mask in the hospital.
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Visiting Guid elines In order to promote a healing environment, these guidelines are for patient visitors, including siblings, relatives and friends.
General Visiting Hours Visiting hours daily 11:00 a.m. – 8:00 p.m.
Visitors Identification and Passes Identification is required upon arrival
Identification includes a picture ID. All visitors - adults and children - must check in at the hospital’s information desk in the main entrance when they arrive. A visitor pass will be issued to all visitors during visiting hours. All visitor passes expires on the day received; visitors need a new pass for each day on the unit.
The visitor pass must be worn at all times
The pass must be worn during the visit and returned to the information desk when leaving.
Number of Visitors In a cabin (room) with one patient, visitors are limited to four visitors in the room at the same time. Two visitors per patient will be allowed in double occupant cabins (rooms). A larger number of visitors may visit in the common area or consult room. Visiting hours and the number of visitors may be limited for certain reasons. This will depend on the patient’s condition, family, or patient wishes, or the needs of your child’s cabin mate (room mate).
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Who can visit? Parents, guardians or primary caregivers must give permission for all visitors before they arrive on the unit to the nurse. • Visitors who are younger than 16 years of age must be supervised by an adult. An adult is someone who is at least 18 years of age. • All visiting children must stop at the Security area in the Lobby and complete a brief health screening questionnaire. • All visitors must be free from any infection diseases. This includes any recent exposure to known infectious diseases to which they are not immune or have not been vaccinated. For example, chicken pox. Visitors with colds or other infectious illnesses are asked to remain home until they are well. • All visitors, adults as well as children, must have and wear a visitors badge. • Visitors under the age of 18 years are not permitted to spend the night.
Sibling/Peer visitation is encouraged as appropriate. (Brothers, sisters and friends) • Siblings or approved friends of patients who are over the age of 16 years may visit during General Visiting Hours (11 a.m. - 8 p.m.) • Siblings or approved friends between the ages of 6 and 16 years must be accompanied by the patient’s parent/ guardian/primary caregiver or approved adult. • Visitation by siblings under the age of 6 years must be prearranged and approved by the nursing staff and is limited to single rooms and double rooms with one patient, or a consult room. (See Special Visiting Pass) • Sibling visitation with more than two children must also be prearranged and approved with nursing, who will then inform the Lobby Security desk.
Special Visiting Groups • A Special Visiting Pass will be completed by a member of the nursing leadership team (Team Leader, Nursing Director or off-shift supervisor - ANC) for any visitations that are pre-arranged and approved before the visit. Examples of appropriate use are: o Arrangements for siblings under the age of two o Arrangements for group visits o A birthday party • The pass will be completed and distributed to the parent • The pass expires after its dated use. A new Pass will need to be approved for other visitation arrangements • Upon check-in at the hospital’s Information Desk in the main Lobby, all members of the visiting group will be given a “Special Visiting Pass” which must be worn during their entire visit.
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Accommoda
tions
We hope to make your time at the hospital as comfortable and convenient as possible. So, we provide some features and services to accommodate your likely needs and expectations.
ATM The Automated Teller Machine is located on the ground floor, just south of the cafeteria. See the section entitled Nearby Conveniences for a list of bank locations.
Bathrooms Parents may use cabin bathrooms only when they are in a single room or their child is on isolation. This is for infection control issues. Visitors may not use patient bathrooms.
Internet Access The hospital has a wireless network that enables you to access the internet from your personal laptop computer from most locations in the hospital. The network is called LaRaPort. We encourage you to safeguard your computer and other valuables. Please do not leave your computer unattended.
Mail Mail for your child should be addressed to: Your child’s full name La Rabida Children’s Hospital E. 65th Street at Lake Michigan Chicago IL 60649
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After discharge, your child’s mail will be forwarded to your home. For outgoing mail, there is a U.S. Postal Service mailbox outside the hospital at the main entrance.
Pharmacy The La Rabida Pharmacy is located on the first floor near the outpatient waiting area.
Pharmacy’s Hours Monday through Friday, 8 a.m. to 8 p.m.
Room Temperature Too hot or too cold? There is a thermostat by the handwashing sink in each cabin to control the temperature in your child’s area.
Shower Facility
Washers and Dryers
For your convenience, a shower, equipped with soap and towels for your use, is located in the Parent Room on the second floor between the South and North Decks of the S.S. La Rabida.
A washer and dryer are available at no charge for you to do laundry for your hospitalized child. We request that you use the laundry products that are available in the dispensing machine. Please contact a nursing crew member to assist you with the use of these facilities.
Telephone Service Cabins are equipped with a telephone at each child’s bedside. Passengers can call out any time. Incoming calls are not allowed between 10 p.m. to 7 a.m. Cell phones may be used during visits to the S.S. La Rabida; however, please for the comfort of our patients and staff turn your ringer to vibration/silent mode.
Well-Being Checks We encourage parents, guardian or primary caregivers to check-in on their child’s wellbeing when they are unable to visit. You may call into the nurses’ station anytime, day or night, to inquire about your child’s status.
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Dining Options fo r You and Guests Cafeteria Service and Hours The hospital cafeteria is located on the lower center level of the hospital. You, as well as your family members and guests, are welcome to dine in the cafeteria. It offers both hot and cold food items as well as many beverage and snack options. The cafeteria is open Monday through Friday for breakfast, lunch and dinner, except on holidays.
Cafeteria Hours
Dining with Your Child Meal time is family time. La Rabida offers free meals to the parent or primary caregiver of an inpatient. Please see your Child’s nurse to request a “Bedside Meal Ticket” during cafeteria hours or order a boxed meal when the cafeteria is closed. To order a boxed meal please inform your nurse that you would like a boxed meal.
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Breakfast 7 a.m. to 9:00 a.m. (Full menu) 9:00 a.m. to 10:00 a.m. (Limited menu) Lunch 11:30 a.m. to 1:30 p.m. (Full menu) 1:30 p.m. to 2:00 p.m. (Light lunch food) Dinner 3 p.m. to 6 p.m.
The Cafeteria is closed on weekends.
A “Bedside Meal Ticket” will allow you to choose: • One entrée with two sides • Or, one sandwich, soup or salad combo • And one dessert
Please plan to order boxed meals early. The deadlines are 6:30 a.m. for breakfast, 11 a.m. for lunch and 4 p.m. for dinner. Ask your nurse to order a boxed meal.
One ticket is available per family, per meal.
24 Hour Snack Room
If your child is able, consider eating your meal on the Sun Deck which is located just across from the nursing station. This will give you and your child an opportunity to meet other S.S. La Rabida passengers (patients).
The snack room features assorted food vending machines, a microwave, change machine, and table seating. It is located on the lower level north of the cafeteria.
Carry in Food and Storage
Outside food may be brought on board and enjoyed within your child’s room. Food that needs to be refigerated can be kept in the unit refrigerator for up to 48 hours (2 days). Clearly mark the container with your child’s name, room number, and date and ask a nursing crew member to refrigerate it for you. Opened food cannot be stored at bedside. Food must be stored in a resealable package or container. Please bring containers from home.
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Aid and Reso
urces
La Rabida helps you access resources to ease your worries and concerns.
Language Assistance Language interpretation, including hearing impaired, is available at no cost to families. Notify any staff member when assistance is needed. Or, you can call 773.363.6700, extension 8628. Contamos con servicio de interprete: Si necesita servicios en espanol informe a cualquier miembro del personal o llame a la 773.363.6700, extension 8628.
Telecommunications Devices for the Deaf TDDs are available at the front desk of the main lobby, the Emergency Treatment Room, and in the Outpatient Clinic area.
The application form is available in our Patient Financial Services Department which is located on the far north end of the lower level of the hospital. Return the completed form to Patient Financial Services.
Patient Financial Services Department Hours
Weekdays 9:00 a.m. to 4:00 p.m.
Car Seat Program La Rabida has a car seat program and for a small fee, car seats designed for children with special needs, are provided by this program. For information, please call the car seat coordinator at 773.256.5714, or ask your Case Manager.
Patient Financial Assistance La Rabida offers financial assistance to qualified patients. Submission of the Financial Assistance Application is required to determine eligibility for the program.
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Or, you may download the form from our website: www.larabida.org, in the Resources for Families section.
Parent/Caregiver Training Classes La Rabida offers training classes for parents and caregivers on: • Gastrostomy tube care (G-tubes) • Tracheotomy tube care (Trachs) • Ventilator care • CPR/Airway obstruction training Please, call 773.256.5761 to request more information.
Health and S a A S h a r e d R e fe t y : sponsibility Your child’ safety and comfort are of great concern to us. We ask that parents and guests observe our health and safety guidelines.
Accident Prevention When your child is in a crib or bed, please make sure that the side rails are up at all times to avoid falls. Do not leave your child unattended when in a high chair. Always fasten the safety belt when your child is in a high chair, stroller or wheelchair. Do not leave medications of any kind, prescription or over the counter, at your child’s bedside.
Crib Policy Patients three years of age or younger must sleep in a crib. Your child may no longer sleep in a crib at home, but in the hospital this is the safest way for a child of this age to sleep.
Electrical Safety You may bring the following into the hospital: • Laptops (do not use outlets at the head of the patient bed). • Personal cells phones (keep ring on vibrate) Please do not use outlets at the head of the patient bed.
Please do not bring the following electrical devices into the hospital: • DVD players • CD players and/or radios • Curling irons and/or hair dryers • Fans and/or humidifiers • Entertainment centers (for example: Nintendo or X-Box ) • Coffee/tea pots You will be asked to take home any items that are not safe or pose a danger to others.
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Infection Prevention Germs and bacteria exist in all homes, work places, and hospitals. When ill, your child is more at risk to infection. One of the most effective ways to reduce the spread of germs and bacteria is hand washing. Here’s how you can support our hand washing campaign: • Wash your hands when you enter and before you leave your child’s room • Kindly ask your family and visitors to wash their hands when they enter and before they leave your child’s room • Remind nurses, therapists, and doctors to wash their hands or wear gloves before caring for your child Some patients may be on isolation and this means precautions must be taken to either protect them from getting infections or from spreading infection. If your child is on isolation, a sign will be posted outside the cabin door stating the type of isolation and what must be worn while in the room. We ask that you follow the instructions on the sign when you are in the room with your child. Please ask your nurse or doctor what you can do to help.
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Lastly, please ask family members and visitors who have colds or other signs of illness not to visit your child in the hospital.
Hospital Security Hospital security is on site 24 hours a day to provide for safety of your child, guests, and crew members. La Rabida’s security staff are law enforcement officers and trained security guards who provide: • 24 hour inside and outside patrol of the hospital and grounds with camera surveillance • Escort services for visitors to and from cars upon request Please tell a staff member about any concerns or needs you may have.
Smoking La Rabida is a smoke-free environment. There is no smoking allowed anywhere in the hospital. Smoking is permitted outside in the areas north and south of the hospital, as well as across the street from the Hospital.
Nearby Conve
n ie n c e s
Banks
The Ronald McDonald House
Shore Bank 7054 S. Jeffrey Blvd. Phone: 773.420.4748 Fifth Third Bank 1606 E. 79th Street Phone: 773.768.1501
The Ronald McDonald House, located near the University of Chicago campus in Hyde Park, may be available to you if you need a place to stay while your child is being hospitalized aboard the S.S. La Rabida. If you need further information on the Ronald McDonald House or other lodging, contact your child’s Case Manager or Social Worker.
Chase Bank 6650 S. Stony Island Avenue Phone: 773.363.5940
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Your Child’s R
ights*
We believe that every infant, child, and adolescent has the right to be respected as an individual and to receive competent, compassionate care. As part of that right, we recognize that the hospital has the responsibility to provide the following rights to your child and all patients. • Your child has the right to be free from restraints of any form that are not medically necessary. • You and your child have the right to be free from mental or physical abuse or harassment. • You and you child have the right to have your spiritual needs addressed.
Involvement in Care Decisions Access to Respectful Care • You and your child have the right to receive necessary care regardless of your race, sex, national origin, marital status, sexual orientation, beliefs, values, language, ability to function, age, disability, or source of payment. • You and your child have the right to receive considerate and respectful care in a smokefree environment. • You and your child have the right to privacy in personal treatment and the right to personal privacy whether occupying a single or double room. • You and your child have the right to receive information about rules involving your care or conduct. • You and your child have the right to an interpreter to assist you or your family in understanding his/her care. • You and your child have the right to have proper assessment and management of pain.
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• You and your child have the right to have information about his/her condition, treatment, and prognosis, including unanticipated outcomes of care. • You and your child are entitled to know who is responsible for his/her direct care and their professional titles. • You and your child have the right to receive education about the safe use of medications, medical equipment, potential food-drug interactions, and counseling on nutrition and modified diets. • You and your child have the right to be involved in the planning, completion, and review of his/her plan of care, including the discharge plan of care for after your child leaves the hospital. • You and your child may refuse treatment to the extent permitted by law. It is our responsibility to discuss with you the possible results of your refusal. • You and your child have the right to explore and decide with his/her physician and healthcare professionals whether to use life-prolonging procedures.
• No experimental procedure can be a part of your child’s care without your approval. You and your child’s rights will be protected during research, investigation, and clinical trials involving human subjects. • You and your child’s right to make decisions about healthcare does not mean that you can demand treatment and services that are medically inappropriate or unnecessary. • You and your child have the right to request the uses and disclosures we made of medical information about him/her.
Access to Your Child’s Medical Record You and your child have the right to see his/her medical record and/or have it explained to you at a time suitable for both you and the staff. Once discharged, you may request and obtain a copy of the record for a reasonable fee from the Health and Information Management Department. A Medical Records Request Form may be downloaded from our website. See the Resources for Families section at www.larabida.org or call 773.363.6335.
• You and your child have the right to request restrictions on certain uses and disclosures of protected health information, although La Rabida Children’s Hospital is not required to agree to a requested restriction. • You and your child have the right to receive confidential communications of protected health information as applicable by law and to inspect, copy, and amend protected health information as provided by law. • You and your child have a right to obtain a paper copy of La Rabida’s Notice of Privacy Practices for Protected Health Information. • You and your child have the right to decline listing as a patient in the admissions directory and to decline having marketing information sent to you.
Confidentiality of Care • Your child’s medical records will be treated as confidential by the hospital staff. No one outside the hospital, except the referring physician, may be given a copy of the record without your written permission. Exceptions are as required by law, transfer of care, or third party payor/ insurance contract. • You and your child have the right to have a family member and your own physician notified of your admission to the hospital.
*Along with these rights, we also require parents and families to abide by certain responsibilities.
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The Family’s Responsibilities • You, your family, and visitors are responsible for following the rules involving patient care and conduct. These include visitation and no smoking policies plus infection control practices and hand washing. • You are responsible for providing a complete and accurate medical history. This history should include all prescribed and over-the-counter medications that your child is taking. • You are responsible for informing us about all treatment and interventions that your child is involved in. • You are responsible for following the suggestions and advice prescribed in a course of treatment by your healthcare providers. • If your refusal of treatment prevents us from providing care according to ethical and pro- fessional standards, we may need to end our relationship with you after giving you reasonable notice. • You are responsible for being considerate of the rights of other patients and La Rabida Children’s Hospital personnel and property. • You are responsible for providing information about unexpected difficulties you have involving your child’s healthcare.
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• You are responsible for making it known whether you clearly understand your child’s plan of care and the things you are asked to do. • You are responsible for making appointments and arriving on time. You must call us in advance when you cannot keep a scheduled appointment. • You are responsible for providing us with correct information about your sources of payments and ability to pay your bill. Adapted from the University of Michigan Hospitals.
Preparing to
Go Home
Our goal is to prepare you and your child for a smooth and safe transition home. This preparation begins upon admission. Your child will be assigned a case manager, either a nurse or social worker. The case manager will be involved in your child’s care coordination throughout the hospital stay and ready you for your child’s at-home needs following discharge. If you are not sure who this person is, ask your nurse or call the Case Management office at 773-753-8659.
Learning You will work closely with crew members throughout your child’s hospitalization to raise your awareness of your child’s condition and what is required to sustain your child’s health and safety at home. You may receive a binder containing information and training materials. Please keep this binder with you during your hospital visits as you will refer to it frequently. In addition, you will be involved in various learning activities, including family meetings, teaching plans, and one-to-one training sessions. You will be assisted in learning the specific skills needed to care for your child at home.
Family meetings Generally, these are meetings called by the healthcare crew or a parent to address your individual concerns and needs and establish goals for discharge.
Teaching plans
These are written instructions on your child’s at-home plan of care. They are intended to go in your binder. These plans serve as reminders of your child’s needs, including vent settings, feeding times, and medication doses and schedules.
One-to-ones This a time to go over your child’s athome care plan in great detail. This can be done by any member of the healthcare crew. The goal here is to help you to better understand your child’s condition through books, guides, videos and training sessions. All handouts will go into your binder.
Discharge Plans Before we discharge your child, we will review the at-home care plans and requirements with you. All required at-home services and equipment are arranged prior to discharge.
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The objective is to help sustain your child’s health while at home and help your child thrive. If you do not agree with something or have questions, please ask or tell your case manager, nurse or doctor. Remember: Education binders contain all the information you need to care for your child. Prior to discharge, review the contents of the binder with your Case Manager. Only, a parent or legal guardian may take a child home upon discharge from the hospital.
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If for some reason this is not possible, you must authorize and give us the name of the person who will take your child home. Authorization can be written and/or verbal. Please provide the name of the person to your nurse or social worker. This person must be 18 years of age and provide us with photo identification.
Billing Questions Please direct any questions regarding your child’s hospital bill to our Patient Accounts Department at 773.753.8678.
Patient Feedback a nd Medical Ethics Compliments and Concerns We want to give you and your child the best possible care. If you have compliments or concerns about your or your child’s La Rabida experience, please feel free to drop a note in one of our suggestions boxes. They are located in the S. S. La Rabida and throughout the hospital for your convenience. We will address every issue that is placed in the suggestion box. If you choose to leave your name and number on the suggestion, we will contact you with a follow-up phone call. The Patient Representative is your advocate and will answer your questions and address your immediate concerns, while helping you understand La Rabida policies and services. Our patient representative will orient your child and family to the hospital and visit you during your stay to make sure your needs are being met. Call 773.256.5759 to reach the Patient Representative. If you have a suggestion about your child’s care or a way that we can better serve you, please call our ‘Speak Up’ line at 773.363.6700, extension 4599. You can also ask to speak to the manager of the patient care area in case you have concerns about your child’s care or a staff member. If you are not satisfied with our response, you can contact the Vice President of Patient Care at 773.753.8628 or Hospital Administration at 773.753.8640.
Patient Satisfaction Survey Shortly after your child’s departure from La Rabida, you may receive a phone call from a hospital representative to ask you about your child’s care and your overall hospital experience at La Rabida. Your experiences are very important to us so please let us know how your stay was during your child’s voyage.
Ethics Most concerns can be resolved by the family and the healthcare team. However, there are times when it may help to talk about ethical issues surrounding the care of your child with another group of professionals. La Rabida encourages and supports patients and parents in identifying and resolving ethical issues that may arise. Speak with your Attending Physician and/or contact the Speak Up Line at 773.363.6700, extension 4599 if you have ethical questions.
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Driving Direc
tions
To obtain driving directions from Mapquest, the online mapping service, please enter this destination address for La Rabida: 6501 Promontory Drive, Chicago, Illinois 60649.
From the North ... ......................... Lake Shore Dr.
Edens
Ke nne
dy
41
ey . .. .. . . . . ........................ ..
...............
90
........................
94
ay
...
95th St.
yw
................. ........... 67th St.
.
Sk
...
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Marquette Rd.
...
Take I-94 (or I-90 Skyway) West to Stony Island. At Marquette Road (65th Street), turn right. Continue about Âź mile to the first drive on the left. Turn left at the La Rabida sign.
90
41
South Shore Dr.
From Indiana
41
Jeffrey Blvd.
From south of 65th street, go east to Jeffery Boulevard and follow above directions from SOUTH. From north of 65th Street, go east to Lake Shore Drive and follow the above directions from NORTH.
.... ............... ...... ...... ... ... ... r. ... e D ... or ... Sh . .. e ...... Lak Stony Island Ave.
From the West
90
Dan Ryan
Take Jeffery Boulevard to Marquette Road (65th Street). Turn right and go about a quarter mile to the first drive on the left, just past the boat harbor. Turn left at the La Rabida sign.
Jeffr
Eisenhower
From the South
... ..
290
............
Take Lake Shore Drive (U.S. 41) to Marquette Road (65th Street). Turn left at light and go about a quarter mile to the first drive on the left, just past the boat harbor. Turn left at the La Rabida sign.
Transportation Op
tions and Parking
Bus Service The hospital is accessible by public transportation.
The CTA Route #67 bus that displays La Rabida on the bus marquee stops at the hospital: every half hour between 6 a.m. and 11 p.m. A detailed schedule is available at the information desks in the front lobby and the outpatient clinic. Convenient connections can be made from many major CTA lines and the Metra 59th Street Station.
Cab Service
Please do not leave valuables in your vehicle. La Rabida cannot be responsible for stolen items. La Rabida will provide escort service to and from your vehicle. Please look for the blue van with our hospital name and logo on it.
Shuttle Service To/From The University of Chicago La Rabida provides shuttle service to the University of Chicago campus. The shuttle leaves La Rabida and drops off at the University of Chicago Wyler entrance. Please ask the front desk for departure times and/or the current schedule.
Please ask the attendant at the front desk if you need help calling a cab.
On-site Parking and Escort Service The available parking around the hospital is public and part of the Chicago Park District. Handicapped parking is available directly in front of the hospital’s main entrance. There is no charge for parking. However, if you plan to stay overnight, please move your car closer to the building and ask the front desk for an overnight parking pass.
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My Child’s Cre w Members Use this space to record the names of key crew members who will be involved in your child’s care.
Attending Physician:
......................................................................................................................... Case Manager:
......................................................................................................................... Patient Representative:
......................................................................................................................... Rehab Team Members:
......................................................................................................................... ......................................................................................................................... ......................................................................................................................... ......................................................................................................................... Inpatient Director of Nursing:
......................................................................................................................... Direct Telephone Number to My Cilld’s Room:
.........................................................................................................................
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Contact Dir e c t or y Hospital (main number)
773.363.6700
Case Management Department
773.753.8659
Outpatient Pharmacy
773.753.8655
Patient Accounts Department (Billing)
773.753.8677
Patient Financial Assistance
773.753.8677
Security
773.753.8646
Clinic Numbers to Schedule Follow-Up Appointments ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... Important Notes ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... ..................................................................................................................... .....................................................................................................................
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La Rabida Children’s Hospital is a specialty hospital with a very special mission. It is the only hospital of its kind in Chicago, focusing on the treatment of children with chronic illness, developmental disabilities, or who have experienced trauma. Since 1896, it has welcomed every child without regard to a family’s ability to pay. The vast majority of La Rabida’s patients have medically complex, lifelong conditions and require interdisciplinary and coordinated care. Under one roof, La Rabida provides a wide range of services to address each child’s total well being. The care team identifies what the child needs today in order to maximize the possibilities for a health sustaining, life enriching future. La Rabida builds brighter futures for 9,000 children each year.
www.larabida.org
If language translation assistance is required… Please notify any staff member or call extension 8628. Si necesita servicios en español informe a cualquier miembro del personal o llame a la extensioń 8628.