June 2011

A few weeks ago, John began experiencing some pain. He is unable to communicate where the pain radiates from but we knew that something was wrong because he wasn't sleeping well and his muscles were rigid and his face was strained. As the days went by, it got progressively worse and when medication changes didn't help, Holly made the difficult decision to take John to the hospital emergency room. An ambulance came to get him and Holly rode with him and unfortunately the ambulance company was unsure of where the hospital was (if you can believe that) so it took a couple of hours to get there instead of the usual 20 minutes which only exacerbated his pain.

Since that time, the hospital staff have been trying to figure out what exactly is going on and have been running tests to determine what might be causing the pain. Over the weekend, it became so severe that they moved him into intensive care to try to medically manage the pain better. Needless to say, it was a long few days with very little sleep for Holly as she was unable to leave him for fear that he would be unable to communicate his needs. Additionally, as many of you have probably experienced, some of the hospital staff weren't immediately helpful to John's needs and having an advocate there is imperative to make sure he gets medications/tube feedings on time and receives good care. Since he has been in the intensive care unit the staff have been great but those first couple of days were very trying with Holly providing the bulk of John's care and trying to comfort him. With a brain injury, medications seem to work differently and aren't as effective. This seems to be especially true with pain medications so it was a constant fight with nursing staff to give John enough to keep him comfortable. Finally, when he reached ICU, they were able to get him to a comfortable level but those first few days at the hospital were agonizing.

John has undergone a catscan, a brainscan, an mri and tomorrow they are going to do a dye test to make sure that his baclofen pump and leads are in place and doing what they are supposed to be doing. As we get more information, I will post it here. As always, thanks for keeping John in your thoughts.