Health and Disability

When your child is medically fragile, you often end up in the hospital at some point, and it can be overwhelming for both you and your child. Here are six ways we advocated for our child that helped us when she was admitted to the hospital:

1. Don’t accept any treatment plan without a reason.

The first time we were admitted to the ICU we not only made them explain why they were suggesting certain treatments but also what the other options were. We were able to learn about our daughter’s medical care and what it meant to her condition.

2. Always attend rounds.

This is where decisions are made and ideas and concerns voiced by all parties. There are often specialists and nurses present. Don’t be afraid to ask questions. You are part of your child’s care team. It also helps to discuss your goals with your nurse ahead of time so that they can help advocate for them.

3. You don’t have to click with everyone.

As in every job there are people who do things their own way. Every nurse, respiratory therapist, X-ray technician and phlebotomist will be different, and if someone is being difficult, then it’s within your rights to complain. You may have to speak with their supervisor who will encourage you to work together. It usually gets the job done.