Participating in Your Child's Care

Asking Questions

When you’re caring for a sick child and are being presented with loads of information during each hospital visit or doctor’s appointment, it’s easy to feel overwhelmed. Once you leave and are able to reflect on your visit, you may realize that the questions you wanted to ask completely slipped your mind.

Here at Floating Hospital for Children, we encourage you to be an active participant in your child’s care and to stay well-informed about your child’s condition and treatment. One of the easiest ways to do that is to ask questions. You may find it helpful to write down questions ahead of time and bring that list the next time you visit us. If your child is old enough, encourage them to ask questions as well.

Here is a sample list of questions you may want to ask your child’s care team:

  • How should I tell my child about their condition?
  • What has other patients’ experiences been like with this condition/treatment?
  • What tests will my child need to undergo?
  • When will I receive results from my child’s tests?
  • How will my child be prepared for the surgery or procedure?
  • How long will the surgery or procedure take?
  • What happens immediately after the surgery or procedure?
  • When will I be able to see my child after the surgery or procedure?
  • How long will my child stay in the hospital?
  • When will my child be able to participate in school and sports again?
  • What will I need to do to keep my child healthy once they are discharged?
  • What (if any) medication will my child need to take?
    • When/how often does the medication need to be taken?
    • Should my child stay away from certain medications/food while on this medication?
    • What are the possible side effects?
    • How will I get this medication refilled?
  • When/how should I contact my child’s doctor?
  • Where can I find more information on my child’s condition and treatment?

Tips for Organizing Care

When your child faces complex medical problems, it’s hard to keep track of everything that goes into their care. Creating and maintaining a log of procedures, medications and appointments can serve as helpful reminders and make it easier for you to keep up. Print the following forms and keep them in a binder or folder dedicated to your child's health care.

Below are a few things you can do to organize your child’s care:

  • Keep log of lab work and procedures [PRINT]
    • Include dates, reasons why the lab work or procedure was ordered, and results
  • Track changes in medications [PRINT]
    • Include ALL of the medications your child is currently taking
    • Write down dosages, how frequently your child takes it, when/why it was prescribed and when your child stops taking it
  • Keep a symptoms journal [PRINT]
    • List your child's symptoms. Indicate how severe they are, when they occur, where they occur, etc.
  • Log appointments [PRINT]
    • Before your appointment, write down the questions you'd like answered, your top concerns and your goals for the appointment
    • Include date, physician and reason for appointment
    • Once your appointment is over, write up a brief summary of what was discussed
    • Be sure to jot down “next steps” – the date of your child’s next appointment and information on how/when to contact your child’s care team

If your child has special health needs, like multiple chronic conditions or technology dependence, our complex care team will work with you and your loved ones to navigate through treatment and achieve the best possible care.