I have a child that has a progressive muscle disease. That means she is declining and losing abilities. Basically, her development is going backwards, not forwards. So now, at 13-years-old, she is way more medically complex than she was at 3-years-old.
At 3, she only had 2 medical specialists that followed her, and at 13, she has 7 specialists that she sees on a regular basis. She got her first wheelchair at age 9 and had her first hospitalization at age 11.
The first hospitalization was a long 14 days. I learned so much about her medical conditions during that time. I spent a lot of time fighting for things I knew she needed and learning about the things she did not need.
With a child like her, treatment is often a guessing game, even for the professionals. Things are tried, and they either work great or (sometimes) make things worse.
As her mommy, I knew I needed to make a mental note of these things and remember them for the next time she needed to be hospitalized. I knew that with her progressive condition that this would not be the last time she needed the hospital.
There were a few close calls, but her next hospitalization was a year later. I was so worried about it and how I would possibly remember all the mental notes I took from the first visit.
It was amazing. From the ER visit to the admission, my mind sort of just took over. I went into “hospital mode.” I told them what she could not have, where it was best to find a vein, what her diet was, when she needed her meds, how she could not have IV fluids like others, and a ton of other needs—and I did it without even really thinking about it.
Children with complex needs may benefit from a medical home health care model. Learn more about how it works and what it can offer.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.