Taking charge of my son's health

Katie Robinson

As we grow older, get married, have children (not necessarily in that order, but speaking from personal experience), it is human nature for priorities to shift through each stage. In my early 20s, my priority was me. In my late 20s it was all about my husband and me. In my 30s there was a change and it wasn’t about either one of us any longer. It was about them; them being my twin boys now almost four years old.

Being an advocate for their health and wellbeing took priority. My boys were born five weeks premature and while one of them was very healthy and a good weight for being premature, the other struggled at just over 3 lbs. I knew from the beginning he was going to have an uphill battle in regards to his health at least in the short-term. After a month in the NICU, lots of doctor appointments, odd diagnoses and conditions I had never heard of, four years later my son still fights to be what I would call 100% healthy.

He has a lot of common conditions, eczema, asthma, allergies that are not life threatening, but still just keep him on the cusp of sickness and ER visits. As a parent, it can be frustrating to not know which way to go, the best route to take in his best interest or the specialists to see to fix the problem. With how much we have advanced in healthcare it seems simple, why can’t all of these chart notes, conditions, diagnoses, medications, doctor appointments, next steps all be packaged up in one place for streamlined care between providers and for the overall benefit of the patient.

Working in the healthcare industry for 14 years now, I know it isn’t that simple, but we are making huge strides to get there.

In the meantime being his advocate and having a very open relationship with his PCP and specialists has helped tremendously. I document, track and chart who he sees for what condition and the outcome of that visit. I read up and do my own research. My husband does the same. I ask a lot of questions of his doctors and we try a lot of different things to test the outcomes. I am confident one day soon we will have a streamlined approach to situations like my son is in.

Fortunately, it isn’t life or death for him, but not feeling at your best a majority of the time is not how a person, nonetheless a four year old, should live. It is important as a participant in the healthcare system to make it the best you can for you and your family. We can’t control every aspect of our health or of the healthcare system, but being a health advocate for yourself, spouse, partner and/or children is just as important as the correct code on a claim.

I know my priorities will remain the same through these next few stages of life. I hope that as my children get older the healthcare system becomes easier to navigate, but I also hope they learn that taking charge of your own health and being diligent about the outcomes you want to see, should always be a top priority.