6 Ways to Advocate for Your Medically Fragile Child in the Hospital

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.

4. You know your child best.

I know it sounds like a cliché, but this is one of the most important ones. Early on in our ICU experiences, the nurses considered giving our daughter a catheter. When they finally told me what they were planning, I immediately knew the issue. We had been so focused on potty training the previous months that she was holding it hell or high water! One conversation saved a lot of pain and anguish for all parties.

5. Set goals.

They may be lofty, they may be a little outside the box and some may even seem trivial but not to you. From sitting up in bed to early discharge dates, always suggest goals and make sure they know that they’re important to you.

6. It’s not us against them.

Sometimes it may feel like it when they’re pushing extreme measures, but at the end of the day, they want your child to be better. It takes a team effort to get to that end goal in the best way possible.

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