When our daughter Alexis was born with multiple health issues and challenges, the doctors told us that we should prepare to say goodbye within a month. But Alexis, now eight years old, proved them wrong with her strength and will to live. She’s a wonder. She’s very social and wants to engage with the world. And she gets better at engaging with us: getting our attention and communicating her wishes, despite being non-verbal.

 

As a mom, I’ve had to use every tool at my disposal to support Alexis through this journey of operations, physical therapy, and regular visits to emergency rooms and intensive care units. The communication and advocacy I do for her is something almost every mom does for her child, and I think some of the lessons I’ve learned could help anyone.

 

1. Get access to your child’s records, online if possible. The evolution from paper medical records to electronic medical records has really progressed during Alexis’s lifetime. When we got started on this journey, it was all phone calls and getting copies of records sent through the mail. Today, I can go online and get her blood work, her lab results, and other critical information immediately, which helps me keep track of her conditions and what we can do to help her. It’s not perfect. I still don’t have access to her doctor’s notes online and have to wait for them to arrive in the mail. So we’re not quite at the finish line yet, but it keeps getting better. (And don’t forget: you have a legal right to this information.)

 

Keeping track of this information can help you at home, and can help you work with doctors too. A few years ago, Alexis had a problem with her potassium levels that left on its own could have led to serious heart problems. At that time, she was moving between two hospitals, and her doctors didn’t see the pattern. But I was able to see the pattern, and after working hard to get connected to the right specialist, Alexis got the care she needed.

 

2. Keep information in a form that’s useful to everyone, especially you. Having access to medical records is great, but carrying pages and pages of years and years of information around with you isn’t useful or practical. For Alexis, we’ve created a critical care document that both has important information for us, and that we can hand to any caregiver so they have the most important information at their fingertips.

 

You can find some very fancy apps and software to do this kind of thing — in fact, I participated in a process to help design a few — but we just use Google Docs and Word. We have a five page document that keeps an up-to-date record of everything: A summary of Alexis’s issues, current lab results, upcoming appointments, and contact information for every member of her care team. For me, this document is an invaluable resource to have at my fingertips. We also have a visual “quick view” version. For health care providers, this document helps fill them in quickly, and provides the context needed for them to work with us to set an agenda and priorities for Alexis’s care.

 

You don’t have to start from scratch. At my website, you can get blank versions of both the record template and the quick view sheet.

 

3. Don’t forget that you also need a support team. We’re very particular when it comes to Alexis’s care providers. For example, we don’t work with doctors who don’t email. But as a mom and a caregiver, you also need support beyond what the doctors can give you.

 

For most of us, becoming a mom for the first time is already like stepping into a brand new job with no experience. When your child has medical issues on top of that, it can feel like being thrown into water with sharks. You need to find people with whom you can swim — friends, other parents, a stranger in the NICU waiting room — anyone who can relate to what you’re experiencing. In person and online, we’ve found other parents caring for children with similar issues and found a wonderful support community. We trade information, tools like my critical care document, and help connect each other to good doctors and hospitals.

 

I’ve also found that it helps to have a translator. Google can tell you a lot, but you need someone who can look at what you’ve found and identify what’s accurate and what’s junk. For me, that’s my sister, who works as an emergency room doctor. But even if you aren’t lucky enough to have a doctor or nurse in your family, you may be able to access that help through your insurance company, through a local clinic, or by other means.

 

My husband does the cooking. That also helps.

 

 

No one blog post can teach you everything about getting more engaged with your child’s health care, particularly if you have a child with complicated issues. But getting the right information, using the right tools, and finding the right supportive environment are important building blocks for good care and good health.

 

*****

 

Catherine Rose is a mom, a product manager at Philips, a blogger, and an advocate for better family healthcare. She and her family live near Boston, Massachusetts. You can read more from Catherine Rose at her blog, Inspiring Hope.