Nothing is ever easy in the life of a child with a disability. Complications turn into further challenges and their health is so easily affected, it’s frightening.
Ben was crying. He cried for six hours straight without comfort or rest. Nothing worked to stop him. Finally at four in the morning, I decided to take him to the Stollery Pediatric Emergency.
The doctor checked him out; mom and I insisted that it had to be something with his casting and surgery. He asked what had happened last time we brought Ben in and it turned out to be nothing. Really? I have never brought my child into the emergency center without being absolutely sure something beyond our parental control was wrong.
He took X-rays. He found a pin in Ben’s foot which we were unaware was there but later found out it was procedure with his surgery to help keep his muscles extended.
I insisted that he take off Ben’s cast. With little hesitation, he removed it and found Ben’s incision from the surgery and heel where the pin had been set infected. It was the saddest moment of my life. My son was clearly in so much pain and there was nothing we could do for him; we were frustrated with his endless crying. He was in pain. We didn’t know.
Once Francois joined me, we decided (unanimously and without discussing it even) to have the pin removed from his foot regardless of how it effected his surgery results.
Ben was put on IV antibiotics for a week and then moved to oral for another ten days. Home care has been coming out to help change the dressing with the wound. The podiatry clinic wanted to do his follow-up for the infection but I told them that his pediatrician would be responsible for his health concerns and that they could follow-up regarding the muscle/surgery process only.
For the first time since Ben’s birth, I felt as though a process wasn’t followed. Ben’s overall health was not considered. Timelines were too long for someone as fragile as Ben. My trust in the podiatry team is fractured.
We are not a family who often blames or points fingers; we understand that there are greater risks in all health matters when it comes to persons with disabilities but something was missed along the way. It’s frustrating as a parent as we expect doctors to be thorough and be consistent in their treatment. Benjamin fell through the cracks on this one.
It will not happen again.
~Ben is doing much much better now though. Weekly visits to Dr. McGonigle/Chatur and a better care plan.