Family Care Conference

We had a family care conference (big meeting with all the doctors, some nurses, respiratory therapists, clergy, genetic counselors, and ethics committee members) yesterday. We all have a similar understanding now as far as Joey's prognosis and it's pretty grim. The doctors and neurologists feel that the chance of Joey improving any is next to nothing and that his life will be very short. The higher the spinal injury, the shorter the life span and Joey is showing signs of injury that is pretty high (C1 & C2) which is about as bad as it can be and not be dead. As it is, Joey will be on the ventilator the rest of his life. He will never be able to talk or use sign language and the possibility of his cognition being delayed is pretty high as well. Babies learn to communicate and they develop their neurologic pathways by experiencing their world (touching, asking questions, exploring) and Joey's interactions will be severely limited due to his injury so he may be developmentally delayed pretty badly. This is the big difference between Joey and other spinal cord injured patients. Usually, older patients already have neurologic development and some communication skills, where Joey does not. Teaching Joey to communicate using only eye movements will be next to impossible. He is at a huge risk for infection from the mechanical ventilation as well as from lack of movement. Joey can't cough up his secretions, so he could get infections pretty easily. Also, it seems like Joey has been getting more uncomfortable the last few weeks with the tube in his mouth and with not being able to move and look at his world the way he wants to. It's been breaking our hearts that we can't help him and we can't make him any more comfortable. The only thing we can do for him is love him while we have him because we know we're going to lose our son, it's just a matter of when. Sorry to be such a downer, but I felt that it was important for all of you to know where we are and how bad we still need prayer. Thanks so much.