My brother Ben B. sustained a skull fracture Nov. 26, 99. The specifics of how he was injured are still unknown. He underwent a craniotomy for evacuation of the hematoma and was comatose for a least a month. Ben stayed at a level 2 on the Rancho scale for at least 4 months. He is now able to respond to commands and is cognitive with some memory impairment. He has a trach, and has recurrent (MRSA) pneumonia. When he is well, he has made some cognitive gains. He can speak with the use of a passey-muir valve and can be feed applesauce, etc. He has sensation in his arms and legs but is very spastic and has no motor control other than a slight ability to move one hand. He has been evaluated for rehab. but does not qualify. I was trying to get a trial for an intrathecal baclofen pump, but he cannot seem to stay well long enough to proceed with this. He has been on multiple courses of Vancomycin to treat pneumonia or sepsis. I wonder if he is getting adequate nutrition from the g-tube feedings - when he is doing well he seems very hungry and enjoys his "pleasure" feedings. He has had a video swallowing study and did aspirate with 1st thin liquid trial, but did well with thickened liquids/foods. Ben is in a nursing home that seems to be doing a good job caring for him, although it does always seem like I am pushing to insure that he gets more. For instance, if I had not asked for speech, I wonder if they would have ever done it. Right now, I am concerned about his nutrition and question whether his g-tube feedings are adequate. I am trying to determine what is appropriate and if he is receiving that level. I wish there was more information available that would address specific issues. (maybe there is, I just don't know about it). I would love a book that would outline cases and address issues of physical therapy, speech, nutrition - give guidelines for all aspects of care that a family member should be aware of (i.e. standards of care for brain injured patients - specific to level of cognitive and physical ability) I would appreciate any information that might be helpful. Thanks!
