The first day in the PICU can be overwhelming with all of the beeping sounds from the monitors, information being given from the doctors and nurses, and just simply trying to understand what is going on with your child. The following tips and advice come directly from parents whose children have been patients in the PICU.
Communicating with Doctors and Nurses
- Speak up. Ask questions.
- Do not hesitate to voice your concerns. Feel empowered to speak up.
- It is all right to ask “dumb questions” or ask them again. Just ask a lot of questions. You could discover something you’ve been missing out on.
- Write things down (questions, things you notice about your child, medications, etc.) so you do not forget when providers come to your room.
- When you are not able to be at the hospital, call in to your child's nurse day or night to ask how things are going.
Advice and Things to Know
- Talk to doctors and nurses about how you can share information with them and stay updated about care discussions.
- Local support groups are available for families. Ask your child’s nurse, doctor or case manager for information about support groups and groups that may provide financial aid to families with critically ill children.
- Some expenses are tax deductible (such as gas, parking, and food). See the financial tips below for managing health care expenses.
- It might be helpful to read blogs of other families in similar situations and/or keep your own blog. There is wireless internet access outside of the PICU.
- Keep a journal of your meetings with doctors. This will help you remember what was discussed, learn the details of your child’s condition, and record questions for future meetings.
Participating in Rounds
- Family members are invited to attend rounds, but it is not required.
- The timing is somewhat predictable but be prepared to wait. The medical team usually starts at one end of the PICU and works their way around in order of the rooms, spending several minutes with each patient.
- You will not understand a lot of the medical terms. Write down your questions to ask 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 any information provided to you about your child's condition or medical terms ahead of time.
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,” “Telephone Contact”.
- Date each piece of paperwork when you get it, and keep a list of everything on which you have taken action.
- Keep copies of every billing document and staple together bills, explanations of benefits, and statements that are about the same doctor visit or test.
- 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 you need to do
- 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—don’t make any assumptions about qualifying because many families are eligible for some level of benefit.
- Keep a list of names and numbers of people who are resources for you with medical bills and insurance. This can include:
- Case managers
- Social workers
- UNCH financial advisors
- The UNCH billing office
- Get detailed copies of exactly what your health plan covers. Be sure to ask questions if you are unclear about coverage.