The purpose of this blog is to show how faith, my professional training and a healthy sense of humor taught me and continues to teach me that Jesus Christ is always in control. I am a fellow learner as this journey for my child unfolds. My wish is that Ben's legacy gives others hope where there seems to be none. It is also my desire that the information I have assimilated with my medical mind and filtered through a mother's heart gives practical ways to deal with this ever-changing chronic disease. Finally, for the many friends and family members who continue to follow Ben's life change after the injury, the story continues.

Sunday, February 19, 2017

Jim is in Colorado visiting Benjamin this weekend. Ben has been in the hospital for 89 days. Initial admission was for a minor surgery to repair his brain shunt. The distal tube draining in his abdomen was up against the bowel.. easily fixed. The behavioral hospital where he was recovering took the opportunity to refuse to take him back, reasoning that Ben is too medically complicated to be readmitted. He is medically stable at this time.  Benjamin's brain function, however,  has not recovered since the incident in July when an inappropriate discharge from a different hospital after brain surgery resulted in four days of continual seizures. All of Ben's medications were inexplicably and abruptly stopped as a result of this disastrous discharge. Status epilepticus was the direct result. As mentioned in my previous post, the seizures stole much of Ben's progress made since his brain injury in 2012. Although Ben has not recovered, he is making some progress. He does not need his wheelchair. He can handle self care and calls us on the phone often. He listens to his CD collection and watches movies and sports. Ben's memory is severely damaged. He doesn't know where he is most of the time and his behaviors have been worrisomely aggressive. We are back at the beginning, a "do over", like Ground Hog Day.  I have had a few rough moments looking at the picture in front of us. At this time there are no discharge options for Ben's care and he cannot be cared for at home.