A Few Important Points – Take Note
If your child’s condition gets worse, communicate your concern with the medical professionals – a nurse, nurse practitioner, charge nurse or resident. If you feel that your concerns are not being addressed you can request the Rapid Response Team.
Contact a social worker. They are located in the hospital and any nurse can call one for you. Social workers are an extremely good resource and can offer guidance and assistance with everything from parking and accommodations to government paperwork such as Family Support for Children and Disabilities (FSCD).
While in the hospital, ask your bedside nurse questions. You are not expected to know everything, and having more knowledge about why they are doing things might provide comfort to you.
Ask and write down questions and take them to your appointments or keep them close for doctor rounds in hospital. It’s equally important to understand the answer and write it down.
While you’re in the hospital, you must take care of yourself. Keep healthy snacks at the bedside and remember to hydrate, set up respite care so you can go home and shower, sleep, or visit with other children.
Set up CarePages to keep your family and friends informed of your journey. Ask your nurse or social worker for help. CarePages is easy to use.
Before you go home, make sure you understand the next steps.
Ask about follow-up appointments, supplies you may need at home and prescriptions. Make sure you know warning signs for complications.
Make sure you have all your belongings and gather cards from all of the professionals you will be seeing once you are home.
Ask any visitors with any flu or cold-like symptoms not to visit for the duration of their illness. Phone calls and emails are always welcome.
Ask all visitors to wash hands or wear a mask (if applicable) to protect your child during this delicate time. There are lots of hand sanitizer dispensers around the hospital. Know where the nearest one to your child’s bedside is, use it frequently and invite visitors to use it before visiting your child’s bedside.
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