The passage of time has provided me some clarity as to what it means to be an advocate for hospitalized children. Below are seven things that families need to be aware of when their child is in the hospital.
Be objective. It’s very easy to get emotional at what you hear from your doctor or medical team—it’s your child after all. But once this happens it is hard to get back to objectivity; this makes it difficult to follow any of the follow-on steps.
Listen and ask questions. If you don’t understand something, ask for clarification. Medical jargon is difficult to understand or to follow (unless you happen to be in the medical field). If you find yourself getting what seems to be contradictory information (if your child’s case is medically complex this is likely), consider requesting a family meeting or team meeting with the various members of the medical team. We had several of these throughout Phoebe's hospital stay.
Take notes on your child’s diagnoses, treatments, and medications (including type, quantity, and scheduling). Not only is this important for #6 below, it provides a way to review the items.
Stay alert. This is critical, and taking notes helps you know what to pay attention to. Several times we witnessed either incorrect medications or amounts being about to be given to Phoebe. And this was at one of the top pediatric hospitals in the country.
Don’t be afraid to get a second or third opinion. Great doctors realize that there is a lot they don’t know and themselves seek input from other doctors. Other doctors not so much. We were fortunate to have a great doctor who welcomed alternative hypothesis and opinions.
Hold your ground when it matters. Some doctors are intimidating—or try to be. If one pushes you the wrong way, hold firm and clarify your position. Most hospitals have an ombudsman who you can talk to if there is a problem.
Stay positive. This is the hardest one. No matter what you hear, try and stay upbeat—especially around your child.