I was so lost during my time at the trauma hospital. I had so many questions with few people to answer them. Most of the doctors involved in Jared's care were reluctant to give us hope at all. I can only guess that they were worried about giving us "false hope" in case things didn't work out.
It would have been nice if I could have found one person or family member that had experience with Severe Diffuse Axonal Injury. Someone that could have told me what they did regarding their loved one, and what the outcome was. I'm a rational person (most of the time) and I understand that every brain injury is different. One person may recover while another (with the same injury) does not. I just wanted someone to answer my questions that had experienced the long term effects of Jared's type of injury.
The neurosurgeons that we were dealing with in the beginning, had no idea what life is like after the initial trauma. That's not something they experience, they patch them up and send them on to the next doctor.
I researched the Internet constantly. I was looking for every detail that I could find about brain injury, DAI, and the symptoms Jared was suffering from. I researched trachs, peg tubes, left sided weakness, clinical trials, recovery stories, medicines, coma recovery, coma stimulation, and so many, many, more things about the human body.
I tried to tell the doctors that Jared could follow commands. When they couldn't get him to do it when they came in for rotation, they assumed I was just the hopeful, crazy, grieving wife. They tried to tell me he wasn't actually following commands, it was just coincidence. A reflex.
When Jared began to regress after the EVD drain was removed they didn't believe that either. Frustrated I gave up on the ICU doctors and thought I would have better chances of convincing the Physical medicine & Rehabilitation doctors. I didn't have much luck there either.
I researched treatments and coma stimulation. I wanted to try something, anything, to make Jared wake up. Most of the doctors were reluctant to do anything at all. This was a trauma hospital and they really weren't worried about helping him recover. I had to ask them or beg them to do simple things like taking the Foley catheter out and down sizing his trach.I was even told down sizing the trach would cause another regression.
Each morning the doctors made their rounds. Each morning they asked if I found a place to move Jared.
I couldn't find anything thing other than nursing homes for geriatric patients, most of those wouldn't accept him with a trach. Rehab programs wouldn't take him because he couldn't participate in rehab. I found ONE acute care hospital that would offer therapy, but they wouldn't accept his insurance. No one wanted Jared.
I finally found a PM&R doctor that was willing to help me. We talked about the things that I researched and she's the one who prescribed Ambien. She also gave me permission to get Jared out of the bed and into a wheelchair. We talked about stimulation and she was willing to let me try it.
I got Jared out of bed everyday. Soon he was wearing real clothes and going outside. I did everything I could think of to help stimulate him. When we went to the cafeteria I put things in his hands and asked him to hold them. I offered him things to eat, smell, touch, just to see if he would try. I liked going to the cafeteria with him, that's where we ran into all the staff that had been taking care of Jared in ICU. They could see that he was getting better, and I loved seeing their reactions.
I finally told the doctors to find a place that would help Jared with his brain injury. When they did I would be more than happy to move him, and NO NURSING HOMES!
Finally the PM&R doctor (the one that was trying to help) approached me about the VA. With all of our other options exhausted she told me about Dr. G.
Dr. G was at the hospital when Jared was injured. He was very interested in taking care of Jared but he moved to a VA hospital in Virginia for a fellowship program. Dr. G wanted to specialize in Jared's type of injuries. She said Dr. G had been following Jared's case since the beginning and they spoke regularly. I told her I was willing to do anything or go anywhere, if they would actually try to help Jared.
Dr. G arranged a 90 coma emergent program for Jared. They were going to move Jared to the local VA until a bed was available in Virgina.
When we left the trauma hospital Jared was following a few very simple commands with a lot of coaching. He could move his right hand more, and seemed to be more alert.
They day I rolled him out of the trauma hospital I was standing there talking to CNA I had become friends with. I was holding a water bottle and handed it to Jared. I told him "Hold this for me." and Jared reached up and grabbed the bottle from me. The girl was so shocked and excited she was speechless. I gave her a big smile and pushed Jared into the hallway without looking back.