Congenital Heart Center
Preparing for Your Procedure
Appointment Date Time Cardiologist Nurse Practitioner
Welcome to the Congenital Heart Center at University of Michigan C.S. Mott Children’s Hospital! We hope that the information in this packet will answer many of your questions as you prepare to visit the hospital for heart surgery, a cardiac catheterization or an electrophysiology procedure. While you are here with us, you will be treated by many dedicated members of our team who specialize in providing care to patients with congenital and acquired heart disease. We know that visiting the hospital for a procedure can be stressful, but we are committed to making this challenging time as easy as possible. For those of you who have already visited the Congenital Heart Center, you have become part of our family, and you know that we are committed to providing the safest and highest-quality care for our patients and their families. For those of you visiting C.S. Mott Children’s Hospital for the first time, we warmly welcome you as we strive to improve the lives of patients with congenital heart disease in Michigan, across the country and around the world. In this packet, you will find helpful information about the upcoming procedure. This includes information about preparing your child for the procedure and the resources that are available in and around the hospital. Also, we will introduce you to the members of the team who will be taking care of your loved one before, during and after the procedure. We encourage you to read this material before your appointment, and we will review everything with you when we meet. Please do not hesitate to ask us questions at any time. We look forward to your visit. Sincerely, The Congenital Heart Center Team
As you plan your visit in the hospital, it is useful to know about the support and tools available. This will help you understand what is needed to prepare your child emotionally, socially and medically. Your Appointment Details
Information About Your Medical Procedure and the Days Preceding It front pocket Information About Your Cardiologist and/or Surgeon front pocket Preparing Your Child for the Procedure
Preparing as a Family
Family Lodging and Accommodations
Meals and Dining
Getting Around the Hospital
Additional Resources and Services
Your Child’s Care Team
Continued Care for Your Child
Family Fun and Resources
Important Phone Numbers
Preparing Your Child for the Procedure Support from Our Child Life Team
3 to 6 years old: At this age, children are beginning to learn about the days of the week and develop a sense of time. However, it is hard for a child to understand why he or she needs to go to the hospital. Children may worry that they have done something wrong. Reassure your child that something will be fixed while he or she is at the hospital. It is not a punishment. Use simple, short explanations.
7 to 11 years old: At this age, a child is able to understand the reason for a hospital stay or procedure. One week prior to the visit, explain to your child why he or she will be going to the hospital. This will give your child plenty of time to ask questions and talk about any worries he or she might have.
1 2 to 18 years old: At this age, it is best to include your teen in early discussions about the medical condition and procedures. Encourage your teen to ask questions and talk about his or her worries. Most teens are struggling for independence from their parents, while still seeking support. Ask your teen how you can help him or her through the hospital stay.
The Child Life team includes specialists who help patients and families cope with the hospital experience. For children, visiting a hospital can be new and strange. They may feel afraid, confused or nervous about medical tests, instruments or procedures. Our certified Child Life specialists help to prepare children and distract them during tests and procedures. Also, our Child Life specialists are here to let kids just be kids! They provide toys, activities, art therapy, music therapy and a hospital school program. If kids cannot go to the playrooms, these items can be brought to the bedside. If you need support or are having difficulty explaining things to your child at any time before or during your stay, please call our Child Life team at (734) 764-5176.
Before Your Visit Telling your child about hospitalization, cardiac surgery, or any heart procedure can cause stress and anxiety for you as a parent. You may be worried about how to approach these topics with your child, when to tell your child and what words to use. We understand that every child is a unique individual. Each child’s age, past hospital experience, temperament, and coping techniques can affect how he or she deals with the upcoming procedure.
Age-specific Preparation Tips There are many ways to help children prepare for a procedure or overnight stay in the hospital. A child’s personality, language development and ability to comprehend information can all affect his or her understanding of the procedure or hospitalization. Previous hospital experiences can also influence their response. Since children develop at different rates and because every child is different, these recommendations may not exactly describe your child, but they will help guide you:
N ewborns to 2 years old: Concentrate on preparing yourself for the hospital. When you feel at ease, your child will most likely sense your mood and react in the same way.
2 to 3 years old: At this age, younger children don’t understand time the same way that older children and adults do. Talk with the doctors and nurses about how you think your child will manage best in the hospital setting. Consider telling your child about the operation or procedure one or two days before going to the hospital.
For children and teens of any age, it is always important to reassure them that you will be with them as much as possible. Additional things to remember when preparing your child: ■ ■ ■
Be confident that you know your child best. Verbalize your child’s unspoken concerns when necessary. E ncourage your child to express feelings, and tell him or her that all feelings are okay. P rovide explanations about procedures to alleviate fear, even if they have had positive hospital experiences in the past. Prepare yourself by getting support, rest, nutrition and exercise.
Helping Your Child Cope with the Hospital Experience When a child has an illness or injury, he or she faces many potential stressors and psychosocial issues based on their medical condition and developmental stage. Hospitalization can worsen these issues and stressors. The following chart shows common stressors and fears that children may experience when they are hospitalized. For help with your child, consult the Child Life team at (734) 764-5176.
Separation Pain Loss of control Bodily injury Strangers Loud noises Large objects
Separation Loss of control Bodily injury Pain Punishment Strangers
Separation from peers Loss of control Bodily injury (intrusion, disability, mutilation, death) Pain
Loss of control Loss of identity in peer groups Body image Bodily injury (intrusion, disability, mutilation, death) Pain
Crying, clinging to caregiver Inactive, withdrawn, resigned Separation anxiety Stranger anxiety Skill regression Passivity, lethargy Physical fighting
Verbally and physically aggressive Passive Temper tantrums Withdrawal Fear/anxiety Decreased appetite Increased crying, decreased play
Withdrawal Displaced anger, aggression Frustration Information seeking, questioning Passively accepts pain Holds still rigidly Authority testing
Uncooperativeness Withdrawal Displaced anger, aggression Self-assertion Fear, anxiety Limit testing
Adapted from similar materials from Tallahassee Memorial Hospital and the Phoenix Society.
Support from Our Dedicated Social Work Team The Congenital Heart Center patient care team includes social workers who are available to all patients at (734) 764-5176. Our social workers primarily focus on personal and non-medical questions that arise with illnesses and injuries. Social workers provide many services that include: Helping with Patient and Family Concerns ■
Supporting the patient and discussing feelings associated with preparing for a procedure or surgery. Discussing ways to cope with the many stressors families may encounter when a loved one is preparing for a procedure or surgery. Preparing for disruptions in your family’s normal routine. Providing education on how to share information about medical conditions and treatment plans with siblings, relatives and friends. Supporting effective communication between patients, families and medical staff.
Plan for Arrival, Transfer or Discharge ■
When financial support is needed, coordinating your family’s travel and lodging needs before and during your hospital stay. Discussing and problem solving to find ways to minimize financial concerns and burdens. Discussing any possible challenges with discharge and the transition to caring for yourself or your loved one at home. Working in tandem with our discharge planner to ensure a safe and smooth transition home by coordinating necessary support and follow up.
Locating Community Resources and Support Services ■
A ssisting you and your family in connecting with local resources for patients affected by congenital heart disease. These may include support groups, therapists, financial aid, insurance assistance or educational and developmental programs. Advocating and coordinating with schools and employers.
Working with Foster Parents and Guardians ■
If you are a foster parent, have guardianship or are in the process of adoption, please let the staff know as soon as possible. We need to know who can give consent for the procedure; which may be different from your ability to give consent at your doctor’s office. If you are unsure, please ask to speak to the social worker about this topic.
Patients and families are also encouraged to visit our Michigan Game Day Experience, an indoor playground for patients and families located on the 8th Floor. 3
Preparing as a Family ¨ Y our questions: Write the concerns you wish to discuss with your medical team. Ask your child what questions he or she has. Write these down together, as this will emphasize that the questions are important.
Common Tests Done at the Hospital ■
C hest X-Ray: a picture of the chest to look at the heart and lungs
E lectrocardiogram (ECG): a record or display that measures electrical activity of the heart by placing electrodes (stickers) on the chest
E chocardiogram (Echo): a test using ultrasound to look at the heart’s structures and actions and see how well the heart is working
B lood draw: a slight needle poke to remove blood for testing
¨ Packing: Plan to bring your child’s favorite comfort items (stuffed animal, blanket, iPad/tablet.) Bring a crossword puzzle, magazine, book, e-reader or other items to comfort or occupy yourself while you wait. Pack your phone, charger and a favorite snack. If you will be staying overnight, pack personal medications, pajamas, a change of clothing and toiletries for you and your child.
¨ Plan your accommodations and transportation (see hotels on page 6)
¨ R egistration: To be sure that your insurance plan information is up to date in our records so that your insurer can be billed, please call our registration department at (866) 452-9896.
¨ Insurance authorizations and referrals: If your insurance requires an authorization or referral, please contact your primary care doctor prior to this visit and verify that an insurance referral or authorization has been faxed to (734) 232-6210. You may also call our billing coordinator at (734) 763-6915 to confirm that a referral or authorization has been received. If we do not have a referral or authorization on your procedure date, you will be asked to sign a waiver, thereby holding you responsible for the financial charges.
¨ M edical expense concerns: There may be resources for coverage or financial assistance available to you and your family. Consider talking with a social worker at (734) 764-5176 about supplemental insurance or coverage programs for specialty care, like Children’s Special Health Care Services (CSHCS) for Michigan residents or similar programs for out-of-state residents. Investigate benefits or assistance with lodging, meal support, transportation services, and mileage reimbursement. These may be available through CSHCS, Medicaid and Medicaid HMOs. Contact the patient financial counselors at (877) 326-9155 to inquire about insurance plans and programs if you are uninsured or underinsured. Discuss with the social work staff any financial concerns or questions that may make it difficult for you and your family to obtain medical care.
Family Lodging and Accommodations Hotels The Patient and Visitor Hotel Accommodations Program provides enhanced guest services by locating and reserving hotel accommodations for our patients, families and visitors so they can focus on the important things—providing support and care for their child and their own health care needs. The program works with a number of national hotel chains with properties located near the C.S. Mott Children’s Hospital. These local hotels provide special services to our patients and visitors at preferred rates. Many hotels may include a complimentary continental breakfast or shuttle service to and from the medical campus. For reservations or more information, contact your social worker or the Patient and Visitor Accommodations Program at (800) 544-8684 or (734) 936-0135 or visit www.med.umich. edu/hotels. The staff will take your reservation information and preferences on accommodations. They will make the reservation, provide information about the services and features at your particular hotel and provide you with directions.
Patient-room Accommodations Parents often want to know if they can stay in the hospital room with their child. Of course! Most areas of the hospital allow for two parents, legal guardians or designated care-giving adults to stay somewhat comfortably in the child’s private room. There is one area in the Pediatric Cardiothoracic Intensive Care Unit where only one recliner is available for one parent per patient. If you would like to tour the rooms prior to the planned procedure, please ask someone on your medical team so we can arrange to show you where you will stay. Other adults and all children, including siblings under 18, may visit between 9 a.m. and 9 p.m. The number of visitors per patient is dependent on your child’s medical needs and available space. Ronald McDonald House | rmh-annarbor.org ■ The Ronald McDonald House of Ann Arbor, located just across East Hospital Drive, can house families in 29 bedrooms. Twenty-five of those bedrooms have a fourperson capacity, and four bedrooms can sleep five guests. The private bedrooms include a bathroom. In addition there are multiple common areas or living rooms, a recreational room, children’s indoor playroom and outdoor playground, and a full kitchen to store and prepare food. Free laundry facilities are available. Occasionally, local organizations will provide dinner for guests staying at the main Ronald McDonald House.
T he Ronald McDonald House in C.S. Mott Children’s Hospital provides short-term stays (24–48 hours) for parents with children in the Mott intensive care units. Amenities include 12 bedrooms with private baths. Each bedroom has one twin bed and a sleep chair for 1–2 adults. Other features include a kitchenette, living room area and free laundry facilities.
Med Inn The newly renovated Med Inn is a 30-room hotel located in the heart of the Michigan Medicine campus. Families of ICU and surgical patients will enjoy a complimentary continental breakfast in warm and comfortable surroundings. Rooms have one or two queen beds, microwave, refrigerator, flat screen TV’s. Mini-suites and barrier-free rooms are also available. Ann Arbor Mennonite Guest House The guest house is part of a non-profit organization that provides accommodations for patients and their families who are undergoing treatment in hospitals in and around Ann Arbor. It is staffed by volunteers and offered to patients, parents or adult caregivers at a significantly discounted rate. Amenities include private rooms, comfortable beds, a kitchen, washer and dryer, continental breakfast every morning, and a peaceful, quiet retreat area. Shuttle service to the hospital is $5 per trip. Talk to your social worker about house rules and room layouts. Please consult your social worker at (734) 764-5176 for more information on eligibility or to be considered for a referral for the Ronald McDonald House, Med Inn or the Ann Arbor Mennonite Guest House.
Meals and Dining Room service is available for patients at any time. It can be very difficult to leave your child‘s bedside so family members are also allowed to order guest trays from the menu. There is a fee for guest room service, which will be billed directly to your child’s hospital account. Nourishment rooms are accessible on each unit and stocked with juice, crackers, milk and several other items. Mini refrigerators are available in each patient room for personal use. Getaway ‘n Play Café is located on Level 2 in the children’s hospital, and offers a variety of food court-style options including a Subway. You will find grilled items, “grab and go” meals, baked goods and frozen desserts. Einstein Brothers Bagels is located in the University Hospital, Level 2, and offers milk shakes, soups, sandwiches, salads, pastries, bagels, coffee, espresso drinks and kids’ meals.
The Go Brew! (Coffee Kiosk) has two locations, one in the cafeteria at the University Hospital and the other in Taubman Center, Level 2, just outside the children’s hospital entrance. Both offer coffee, espresso drinks, sandwiches, soup and salad. University Hospital Café is located in the University Hospital, Level 2, and offers a full menu of trans-fat free foods, including wraps, madeto-order deli sandwiches, pizza, a salad bar, grilled items, American and international meals, kids’ meals and many healthy choices. Atrium Healthy Heart Café is located in the Cardiovascular Center. It offers coffee, drinks, smoothies, heart-healthy sandwiches, salads and snacks. Vending machines are located on floors 2, 4 and 10 of the children’s hospital.
Important Policies to Note Sugar-free beverages: As part of our commitment to the health and well-being of our community, we sell and distribute only healthy beverages (water and sugar-free drinks) at our hospitals and health centers. Please plan ahead and consider bringing your favorite beverage along for your stay. Smoke-free policy: Michigan Medicine is a smoke-free campus, which means no smoking is permitted on the property. Smoking is permitted on public sidewalks and in private cars with the windows closed. Nicorette mints and patches are available for purchase in the outpatient pharmacy, Taubman Center, Level 1, during business hours. University of Michigan also offers smoking cessation resources. For more information, visit smokefree.umich.edu.
Restaurant delivery is available from a number of local businesses. Ask your unit host for a list of restaurants that provide delivery service, and for directions to the hospital’s food delivery pick-up point.
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E. MEDICAL CENTER DR.
Radiation Oncology Entrance and Parking
Med Sci I A Med Sci II
Comprehensive Cancer Center
U-M Medical School
EMERGENCY Adult and All Psychiatric
Frankel CardioVascular Center
P2 University Hospital South
Patient Floor 2 Parking Connector
P3 E. ANN ST.
E. HURON ST.
Limited Staff Parking
P4 Patient and Staff Parking
E. HOSPITAL DR.
ZINA PITCHER PL.
Med Inn Bldg.
Taubman Medical Library
Med Sci I C
Med Sci I B
Mott Children’s Hospital and Von Voigtlander Women’s Hospital
E. MEDICAL CENTER DR.
C.S. Mott Children’s Hospital is located at 1540 E. Hospital Drive, Ann Arbor, MI 48109 WASHINGTON HTS.
Ronald McDonald House
Parking for C.S. Mott Children’s Hospital Self-parking: There are two options for self-parking at the hospital: Parking Structure P2 or P4. From P2, enter the hospital on the 2nd floor, turn left, walk to the greeting desk near the Big Bird statue and enter C.S. Mott Children’s Hospital. The main hospital elevator bank (#7) will be on the left after the chapel.
If you choose parking structure P4, take the parking elevator to Level 3 to enter the children’s hospital via the pedestrian bridge on Level 3. The main hospital elevators are straight ahead. Bring your parking ticket to the security welcome desk to have it stamped for discounted parking at a rate of $2 for every 24 hours.
If you have any questions or want to know about other parking options call (734) 764-8291. Valet parking: This service is available in the valet circle in front of C.S. Mott Children’s Hospital for $5 per day.
Getting Around the Hospital Specific Locations in C.S. Mott Children’s Hospital Our patient care team may ask you to visit one or all of these locations: Security Check-In: At our main entrances, you will be asked why you are here and how you are feeling to screen for any contagious illness. Children with severe colds, the flu or any other contagious illnesses will not be allowed to visit. You will receive a visitor’s sticker. Use the main elevator bank (#7) to get to all floors. 2nd Floor: Lab/Blood Draw, Getaway and Play Café, Chapel, Family Center If a blood draw is required, it can done on this floor. Also, this is where you will find places to relax and eat. 3rd Floor: Radiology If a chest x-ray or radiology test is required, the radiology check-in desk is just a few steps from the elevator. 4th Floor: Frog Desk, Surgery Check-In If you are checking in for heart surgery, your first stop will be our Frog Desk. This floor houses our operating rooms, pre-operative bays and surgical recovery unit. 10th Floor: Waiting Area and Pediatric Cardiothoracic Intensive Care Unit (PCTU) Families waiting for a loved one undergoing surgery are asked to wait in the Level 10 Family Waiting Lounge where our staff will provide updates during the procedure. After surgery, patients may be cared for in our PCTU. 11th Floor: Pediatric Cardiology Clinic, 11 West, 32-Bed Moderate and General Care Inpatient Unit For a pre-procedure workup, catheterization or electrophysiology procedure, take the main elevators to Level 11. The guest services representative just outside the elevator will direct you down the hall. Please go to Reception D, which is inside a separate waiting area on the left, just beyond the cardiology clinic check-in desk. You may already be familiar with our cardiology clinic. This is where you may return for regular visits with your child’s cardiologist over the years. Our inpatient unit on 11 West is where patients may recover after their procedure.
Additional Resources and Services Wayne and Shelly Jones Family Center Designed by families and health care professionals, the Wayne and Shelly Jones Family Center is a comfortable place for inpatients, outpatients and their families to relax, learn and become advocates for their health care. Staff and volunteers provide information, education and support. Also, the Family Center offers many services, workshops and sibling programs. In addition, they provide books, magazines, games, educational materials and internet access. Weekly highlights include painting for everyone, cupcake therapy and flower therapy.
Spiritual Care During a hospital stay, patients and families are often in need of spiritual or religious resources to help maintain a sense of hope, strength and well-being to deal with life’s challenges. The Spiritual Care Department has compassionate and experienced chaplains available to support you and your family through this difficult time. A chaplain is available 24/7 in house or on call. There are chapels and quiet areas located throughout the Health System, and public religious services are also held there. For more information, please feel free to contact the Spiritual Care Department at (734) 936-4041 or e-mail UMHS-Chaplain@med.umich.edu. Visit us online at www.mottchildren.org/spiritualcare.
Palliative Care and Quality of Life The palliative care team at C.S. Mott Children’s Hospital helps patients of all ages with chronic conditions and/or life-limiting illnesses to enhance their quality of life. Palliative care is a comprehensive approach that focuses on the physical, psychological, social and spiritual needs of patients with chronic and/or life-threatening illnesses. Palliative care can be appropriate at all stages of illness, can be provided at the same time as active or life-prolonging treatments, and can ease the suffering of patients and their families.
The Wayne and Shelly Jones Family Center, located on Floor 2.
and others who offer individualized support for patients and their families. This team works with patients and families to determine specific needs and overall goals of care while helping to navigate the complex medical system. Our specialists help patients of all ages with chronic conditions and/or life-limiting illnesses to stay independent and symptom-free for as long as possible. Palliative care services are provided only by physician referral. For a palliative care consultation, talk with your doctor about a referral to our pediatric palliative care consultation service. For more information, call (734) 232-9593 or visit us online at www.mottchildren.org/palliativecare.
Interpreter Services Each year, Michigan Medicine treats thousands of patients who are deaf, blind, hard of hearing, and those with limited English proficiency (LEP). For these patients, seeking treatment can be confusing and stressful without a trained medical interpreter. Interpreter Services has been providing medical interpreters since before 1990. We have grown from receiving 370 interpreter requests per month to more than 2,000 requests. Our interpreters are carefully screened, highly trained and collectively speak more than 70 languages. When registering at the hospital, please make your language preference and interpreter needs known so that they become part of your medical record.
Palliative care is delivered by an interdisciplinary team of nurses, physicians, social workers, chaplains, pharmacists
Helpful Online Resources C.S. Mott Children’s Hospital mottchildren.org
Children’s Heart Foundation childrensheartfoundation.org
Adult Congenital Heart Association achaheart.org
Mended Hearts mendedhearts.org
American Heart Association heart.org
Pediatric Congenital Heart Association conqueringchd.org
Follow @MottChildren on Facebook, Instagram and Twitter
Your Child’s Care Team
Your child’s care team includes experts in a number of different areas to ensure your child receives comprehensive care that is seamlessly coordinated across all specialists involved. Depending on your child’s own needs, your care team may include cardiologists, surgeons, catheterization and elecrophysiology lab nurses and technicians, operating room nurses and technicians, recovery room nurses, and other specialized staff including respiratory therapists, dietitians, social workers and child life specialists.
Pediatric Cardiologist A specialty-trained pediatrician that is able to diagnose and treat congenital heart disease. Many specialize in certain areas of care such as electrophysiology or cardiac catheterization. C.S. Mott Children’s Hospital has more than 40 pediatric cardiologists on staff and you may meet several of them during your stay.
Pediatric Cardiac Surgeon Specialty-trained surgeons who perform surgery to treat congenital and acquired heart disease in all age groups. C.S. Mott Children’s Hospital has five pediatric cardiac surgeons.
Pediatric Cardiac Nurse Nurses who specialize in pediatric heart disease and provide direct care to patients as well as emotional support, education, and assistance in care coordination during your stay. Nursing staff will be present during your child’s preprocedure testing, procedure, and recovery period.
Advanced Practice Team
Benefits of a Teaching Hospital
The advanced practice team consists of nurse practitioners (NP) and physician’s assistants (PA). They are health care providers who work in collaboration with physicians and other members of the health care team. NPs and PAs have advanced training in the diagnosis and management of illness. They will contact you prior to the procedure to give you instructions and answer any questions you may have. Often, they are the first people you will meet when you arrive for the procedure. An NP or PA will remain part of your health care team throughout the day and provide education on how to care for your child after the procedure.
C.S. Mott Children’s Hospital is a teaching hospital. A teaching hospital, or academic medical center, is a hospital that partners with health care education and research programs, including a medical and nursing school, residency programs and scientists working to advance medical care through research. Teaching hospitals tend to provide many advantages, including:
Anesthesiologists and Nurse Anesthetists The anesthesia team is responsible for taking care of the patient while the physician is doing the procedure. The anesthesia team consists of a congenital cardiac anesthesiologist and either a certified nurse anesthetist (CRNA) or a pediatric anesthesiology fellow. Our anesthesiologists have specialized training in the care and management of patients who have congenital heart defects. To meet the needs of individual patients, they use a wide range of anesthetic techniques—from conscious sedation to general anesthesia.
H ighly trained physicians and surgeons, available 24 hours/day
N ew treatment and cures
S tate-of-the-art technology
S horter hospitalizations for major illnesses and procedures
B etter outcomes and survival rates
You can expect plenty of discussion about your child’s diagnosis and treatment. Sometimes discussions happen because there is more than one good option. Other times it is because students need to learn. Please know that every member of your health care team is focused on providing the highest quality care to your loved one.
Continued Care for Your Child Thanks to incredible advances in congenital heart care, more and more children with congenital heart defects are thriving into adulthood. In fact, more than one million U.S. adults live with such cardiac issues today. Still, having a heart condition often requires life-long medical treatment.
Neurodevelopmental Follow-up Our Congenital Heart Center Neurodevelopmental Follow-up Clinic can help families to identify emerging developmental delays. Although many children with heart disease are thriving, research shows that children who need cardiac surgery during the first year of life are at higher risk for developmental, learning and behavioral concerns later in life. The types of challenges faced by children with heart disease can vary by age. For example, infants may be more likely to have delays in motor skills, such as head control or movement. School-age children or adolescents may have problems with school performance, particularly the selfregulation skills that enable them to plan, focus attention, remember instructions and successfully juggle multiple tasks. Even though some children may not have any obvious developmental or learning problems, they may benefit from periodic assessments at the Congenital Heart Center Neurodevelopmental Follow-up Clinic.
Teens: iHeartChange For adolescents, iHeartChange.org is a website that helps them prepare for transition to adulthood. This website provides information about living with congenital heart disease, specific heart defects and medications. It includes helpful suggestions about school, work, exercise, contraception, pregnancy, emotions and more.
Adult Congenital Heart Care Our Adult Congenital Heart Program is designed to provide expert and collaborative care for adults with congenital heart disease. As your child grows older, you may wish to consider discussing transitioning care to an adult congenital provider. As your child becomes an adult, further surgeries or procedures may be warranted. These may include heart rhythm management, valve replacement, conduit replacement, or other procedures. When considering pregnancy or contraception, special considerations should be discussed with an adult provider. Routine congenital heart care should be continued into adulthood even when feeling well. To learn more about our adult program visit www.umcvc.org/conditions-treatments/congenitalheart-disease.
Research Participation Being a part of a teaching hospital means that many of your care providers are also leaders in clinical research. Designed for the ultimate goal of curing disease and improving quality of life, clinical research studies allow members of your health care team to find the most effective care methods. There are hundreds of U-M researchers who work hard to improve treatment, detect and prevent disease, and educate families about serious health conditions. It is possible that your child may be eligible to participate in a research study. Participation offers hope for many people as well as an opportunity to partner with researchers to find better treatments and advance medical knowledge around the world. If someone approaches you regarding a specific study, know that participation is always optional and your childâ€™s privacy will be maintained. Feel free to speak with your health care team about opportunities and concerns. To learn more about our ongoing research, visit www.UMClinicalStudies.org and http://www.mottchildren.org/conditions-treatments/ ped-heart/research-and-innovation
Family Fun and Resources in Ann Arbor
Ann Arbor Hands-On Museum
Explore the U-M’s “Arb” trails, trees, shrubs and river in one of the richest landscapes in the region. Breathe deeply and enjoy the natural landscape in this restorative wonderland that is adjacent to the C.S. Mott Children’s Hospital. It’s just steps away from the Ronald McDonald House. www.lsa. umich.edu/mbg/see/nicholsarboretum.asp
Goodrich Quality 16 3686 Jackson Rd., Ann Arbor, MI 48103 www.goodrichqualitytheaters.com/michigan/quality16/
Hands-On Museum Admission to the Ann Arbor Hands-On Museum is free for Mott families. Before going, please stop in our Family Center on the 2nd Floor to receive a pass. The mission of the museum is to inspire people to discover the wonder of science, technology, engineering, art and math. www.aahom.org
Michigan Theater 603 East Liberty St., Ann Arbor, MI 48103 www.michtheater.org Ann Arbor 20 4100 Carpenter Rd., Ypsilanti, MI 48197 www.cinemark.com/michigan/ann-arbor-20-and-imax
Ann Arbor YMCA
There are more than 250 unique restaurants with delicious food in the Ann Arbor area. To find an eatery of your choice, visit http://www.visitannarbor.org/dining.
The Ann Arbor YMCA offers free day passes for Mott families. www.annarborymca.org
Domino’s Petting Farm Visiting the Domino’s Petting Farm is free for Mott families. http://www.pettingfarm.com/
Pools, Parks and Playgrounds Visit the following website for a list of pools, parks, playgrounds and other recreation spots in the Ann Arbor area. https://www.a2gov.org/departments/ Parks-Recreation/parks-places/Pages/default.aspx
Ann Arbor features many wonderful and unique shopping options. Briarwood Mall is located about three miles south of the downtown area and is home to 120 stores. Other shopping highlights include Arbor Hills, the Main Street area, the Kerrytown district, and all the shops along South State and Liberty Streets near the U-M campus. https://www.visitannarbor.org http://annarborobserver.com/cg/t0188.html
Library The Ann Arbor District Library Downtown is located at 343 S. 5th Ave, Ann Arbor, MI 48104. For information about free, kid-friendly activities and story times, visit http://aadl.org.
Important Contact Information Cardiac Surgery (734) 936-4980 or (734) 936-4978 This office coordinates and schedules open heart surgery for Drs. Bove, Ohye, Romano, Sassalos and Si.
Child Life Team
(800) 544-8684 This service is available 24/7 to help you find a room in Ann Arbor at a reasonable cost.
Specialists in this office provide support services to help families and children cope with the hospital experience.
Coordinated Care Center for Pediatric Cardiology (734) 936-7784 or (734) 615-6031 Monday â€“ Friday, 7 a.m. â€“ 5 p.m.
Patient and Visitor Hotel Accommodations Program
This department will verify that we have the correct information to bill insurance for your medical expenses.
Office of Patient Relations (734) 936-4330
This office coordinates the pre-procedure workup for surgery, heart catheterization and electrophysiology procedures for patients. Please call if you have any questions or concerns about the procedure.
The Office of Patient Relations and Clinical Risk is dedicated to addressing situations that are inconsistent with the routine operation of the hospital and/or routine care of patients. If the health care that was provided did not meet your expectations, please contact this office.
Guest Assistance Program (GAP) Office
Social Work Department
The staff in the Guest Assistance Program helps alleviate many issues or concerns that may arise during hospitalization. Our dedicated social workers will problem solve, provide community resource information and coordinate the various needs that families have during medical treatment.
Social workers in this department will provide support and resources for patients and families.
mottchildren.org/congenital Michigan Medicine C.S. Mott Childrenâ€™s Hospital 1540 E. Hospital Dr. Ann Arbor, MI 48109 Pediatric Cardiology Coordinated Care Center (734) 936-7784 @MottChildren
This booklet was designed to help patients and families prepare for heart surgery, a cardiac catheterization or an electrophysiology procedu...
Published on Mar 2, 2018
This booklet was designed to help patients and families prepare for heart surgery, a cardiac catheterization or an electrophysiology procedu...