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.
When it comes to your child and their medical needs, there is no such thing as a dumb question. Here’s how I think about asking questions in medical settings as a parent of a child with a disability and a nurse.
Categories: Diagnosis & Health Care