Having a very ill or severely injured child is extremely stressful. But you aren’t alone in your experience. Parents of children who have stayed in UNC Children’s pediatric intensive care unit (PICU) offer the following tips and advice to help you feel more comfortable communicating with healthcare providers, seeking support, and managing expenses.
Main topics are below but you can check here for other useful information.
Who We Are
Who We Are
Attending Physician – an attending physician is a medical doctor of any specialty who has completed all training. An attending physician is in charge of your child’s care and supervises trainee physicians and students. Examples of attending physicians working in the PICU include Pediatric Intensivists, Pediatric Cardiologists, and Pediatric Surgeons.
Pediatric Intensivist – an attending physician or PICU doctor who specializes in caring for critically ill children. There is always a Pediatric Intensivist caring for your child while in the PICU.
PICU Fellow – a doctor who has completed all training as a pediatrician and is in a 3-year training program to become a Pediatric Intensivist.
Resident – a doctor who has completed medical school and is in a training program of 3 or more years to become an attending physician. The resident physicians that rotate in the PICU include those training to be specialists in Pediatric Medicine, Emergency Medicine, and Anesthesiology.
Medical Student – a student who is in training to become a medical doctor.
PICU Charge Nurse – a senior nurse who organizes nursing assignments in the PICU and assists and mentors the staff in the PICU.
PICU Nurse – a nurse caring for your child while in the PICU. Your child’s PICU nurse is usually caring for 1 or 2 patients at a time during their 12 hour shift.
PICU Respiratory Therapist – a medical staff member with advanced training in respiratory care including the operation of breathing machines and oxygen delivery systems.
Rounds and Communication
Participating in Rounds
• Family members are invited, but not required, to attend rounds—dedicated daily times for your medical care team discusses your child’s care plan.
• Rounds usually occur from 7:30 to 10:30 a.m. and 9:00 to 10:00 p.m. The medical team usually starts at one end of the PICU and works its way around in order of the rooms, spending several minutes with each patient.
• You won’t understand a lot of the medical terms. That’s OK. Write down your questions, and ask them at the end of the discussion or later when you can speak with a provider one-on-one.
• Stay focused on the big picture. Don't sweat what you do not understand.
• Read information provided to you about your child's condition or medical terms before rounds.
Communicating With Doctors & Nurses
• Talk with your child’s doctors and nurses about how you can share information and stay up-to-date on care discussions.
• Don’t hesitate to voice concerns. Feel empowered to speak up.
• Ask lots of questions. It’s OK to ask “dumb questions”—or to ask them again. You could discover something you’ve been missing.
• Write things down (questions, things you notice about your child, medications, etc.), so you don’t forget about them when healthcare providers come to your room. Keep notes about meetings with doctors, too—what was discussed, the details of your child’s condition, and questions for future meetings.
• When you’re away from the hospital, it’ OK to call in to your child's nurse any time—day or night—to ask how things are going. The PICU front desk number is 984-974-5491.
Finding Emotional & Financial Support
- UNC Health Care and N.C. Children’s Hospital aim to offer a holistic approach to health care. As part of the PICU clinical team, a pediatric chaplain is available to offer emotional and spiritual support to patients, families, and staff throughout any part of a child’s hospitalization. The pediatric chaplain is in the hospital and available Monday-Friday, 8:30am-4:00pm. During evening and weekend hours, there is an on-call chaplain who can be paged. If you are in need of emotional or spiritual support during your child’s stay, please let your nurse know and a visit with the chaplain can be arranged easily. To find out about other emotional and spiritual resources in the hospital, please visit www.unchpastoralcare.org.
- Ask your child’s nurse or case manager for information about local support services and groups, including any that provide financial aid to families with critically ill children.
- Read blogs written by families in similar situations and/or keep your own blog. Wi-Fi is available outside of the PICU.
Families benefit from the help and support that other families can provide and from information about their child's special needs and available resources. With this information, families can make informed decisions about services and support. The Family Support Network of North Carolina is a statewide network of affiliated local programs.
How can the Family Support Network of North Carolina help you?
- Put you in touch with other parents with similar experience
- Provide a "listening ear"
- Help you become a volunteer Support Parent
- Connect you to resources in your community
- Managing Health Care Expenses
- Create a system for all of your health insurance and billing records.
- Keep file folders labeled by category. For example: “paid,” “pending,” “correspondence” and “telephone contact.”
- Date each piece of paperwork when you get it, and record all actions you take with that paperwork.
- Keep copies of every billing document. Keep all documents for a specific visit or test together (for example: a bill, an explanation of benefits (EOBs), and a statement).
- Keep a telephone log for all of your billing and insurance issues that includes:
- Date of contact
- Date of service
- Name and phone number of the person you contacted
- The result of the phone conversation and any follow-up action you need to take
- Keep a record of non-reimbursable medical expenses, including car mileage, parking, meals, telephone bills, and lodging. These costs may be covered through Medicare or used as an itemized deduction when you file your income taxes.
- Check to see if you qualify for medical assistance. Many families are eligible for some level of benefit.
- Get detailed information about exactly what your health insurance covers. Ask questions if you’re unclear about coverage.
- Keep a list of names and contact information of people who can help answer questions about medical bills and insurance. This can include:
Infection Prevention and Discharge
Critically ill children – or children who require care in the PICU – are at risk of getting serious infections. We want to partner with you to protect all of the children in the hospital from getting a new infection while in the hospital. Please follow all instructions related to wearing special isolation gowns, gloves, and washing hands. If you believe any of the medical care providers did not clean their hands before entering your child’s room or before examining your child – please speak up and remind us just as we would remind you. If you do not understand why we ask for you to wear gowns, masks, or gloves, then please ask us and we will explain your child’s special care.
Discharge & Transition to Home
The PICU has a Case Manager who is a licensed social worker. She is available to assist as needed with paperwork, verification of hospitalization, home care equipment, and home care staffing arrangements.
Parking and Meals
The PICU has limited financial resources from grant funds to assist families with meals and parking. If you have special circumstances requiring assistance, please speak with your child’s nurse. There are a number of events throughout N.C. Children’s Hospital where food and/or meals are provided for parents and primary caregivers of pediatric patients. (Family Activity Calendar flyer posted in the PICU waiting room and available from your child’s nurse).
The Ronald McDonald Family Room is located on the 7th floor of the Children’s Hospital and is open to all pediatric patient parents and primary caregivers. They offer food and snacks Monday-Friday (9:00 am – 5:45 pm).
Food is available to parents and caregivers who are staying at the Ronald McDonald House. The Ronald McDonald House offers shuttle service to and from the hospital (eliminating parking expenses).