July 31, 2009 I wheeled Jared over to the VA hospital. Normally they call an ambulance to move patients to the VA hospital across the street. It seemed pointless to me, I put Jared in a wheelchair everyday and pushed him around, why not across the street?
We rolled Jared into the VA emergency room to be admitted, I remember the nurse looking at me, head cocked to one side "Is this Mr. M?". I replied with a simple "yes" and explained that I was his wife and that we had come from the trauma hospital next door. I'll never her next words, "I thought he was in a coma?"
I laughed a little and said "He's in a coma, not dead."
So many people had such a strange impression of comas. I guess in the past coma patients were left in bed and given standard medical care to keep them alive. I guess people just waited for coma patients to wake up. They found it odd that I wanted to get Jared dressed or eat lunch with him in the cafeteria. I remember the way people stared at me when I put his feet in the grass and how nervous his family had been when I rolled him around outside the hospital.
We can't sit around on these coma patients to wake up, we might be waiting forever! I was determined to live our lives and do as many normal things as possible. Who wants to live life when you can't get out of bed?
The VA hospital in Virginia wouldn't have a bed available until August 18th. We would have to stay at the local VA for 3 weeks.
When he was admitted to the local VA they placed him in a step down ICU unit. they hooked him back to all the monitors that we had fought so hard to be free of. There were several beds in the same room with other patients. I wasn't able to sleep in Jared's room, he had to stay the night at a new hospital all alone.
The VA hospital wasn't as nice as the newly renovated trauma hospital. I was really starting to wonder about my choice to move Jared to the VA system. I was scared.
On the second day they moved him to a private room on the cardiac floor for more observation. Eventually they moved him to a regular floor and we waited.
I went home and stayed for a week. Jared's family took turns sitting with him while I was gone. I wanted to spend time with our children and tie up all the loose ends at home. I had planed to stay three months in Virginia and I didn't know if I would be able to fly home for a visit.
While I was home Jared's mother fought with the doctors to remove the cervical collar. It was causing sores on Jared's face and enough time had passed it was safe to remove.
The ENT doctor accessed Jared before I left. He wasn't sure removing the trach was the best idea so we agreed to down size it again and give him a speaking valve. He placed a consult for general surgery because Jared still had sutures in the base of the trach. General surgery came while I was home. He saw Jared coughing mucus up into his mouth and completely bypassing the trach. He said if Jared could do that he didn't need the trach and removed it.
When I saw Jared for the first time I was so excited. His trach and collar were gone and he look so much more comfortable.
I collected different objects for Jared, hoping one day things would just click for him, and that's exactly what happened, literally. One night Jared was restless, I gave him an ink pen to hold. The kind with the button on the end. A few seconds after put the pen in his hand he started clicking it over and over again as fast as he could. He flipped the pen though his fingers and clicked the button against his body. Spinning the pen around again he started trying to draw on his chest. It was like watching someone come back from the dead, I was amazed. I placed a notebook on Jared's bed and he began to write, I couldn't read it, but still, he wrote. I starred at him for the longest time, watching how natural his movements were.
From that point on Jared began to rapidly improve. Everyday he was doing something new and exciting.
With the trach gone I decided to give Jared showers every night. I'm still not sure why, but Jared began to make noises when he was in the shower.
Every single night I put Jared in the shower chair and gave him a long hot relaxing shower. I encouraged him to moan and make noises, I made noises too.
One night I accidentally splashed a little water in Jared's eye. I held my breath as I watched him reach up and wipe his eye!
The next night he scratched his ear. Jared began throwing balls and exploring his surroundings. he even managed to push himself a few inches in his wheelchair. We started thumb wrestling and doing little hand shakes.
I went shopping and bought all the little things I could think of. A spray bottle, tambourine, squeaky toys, and a lighter. Jared was able to use all the objects I showed him.
It was so exciting to see Jared improving, but there was a small battle in progress. The VA didn't want to pay to fly Jared to Virgina. They were trying to find other options, they also told me that they wouldn't send him unless it was medically necessary, and that their hospital couldn't provide the treatment, and that the facility in Virgina had to be the closest facility that offered the program.
Dr. G saved us again. He sent all the information along with a letter from him personally. In the letter he described the reasons why he wanted Jared there and how they could help him.
The social worker exhausted all other charities and programs, things were looking bad.
I told the social worker that Jared was going to go to Virgina, with or without their help. I called commercial air lines and they would fly him, but doctors
told me they wouldn't release him to fly on a commercial plane. I asked them if I could drive him there, NO! I also asked if we could leave AMA, another fat NO. I'm only Jared's wife, not his legal guardian, I can't do anything AMA.
I knew right then if they wouldn't send Jared to Virgina, I would kidnap him. I was going to sneak him out of the hospital, drive him to Virgina and drop him off at the VA. So what if they arrested me? I could see the headlines "Wife kidnaps comatose husband to seek medical help.", it was going to be a mess.
Thankfully the hospital agreed to transport Jared, no jail time for me. I guess when I started suggesting the unthinkable (placing a coma patient on a commercial flight), they realized I was serious.
Before we left for Virgina I wanted to make one last visit. At this point Jared had been in a coma for over two months and was finally showing signs of recovery. I dressed Jared, placed him in his wheel chair, gathered "objects" up, and wheeled him into the ICU of the trauma hospital. I pushed Jared up to the nurses station and asked them to page Dr. E.
Dr. E approached us a few minutes later with a look of amazement in his eyes. Just sitting in his chair without a trach and his eyes open he had surpassed Dr. E's original prognosis. I explained Jared's improvements, telling him about the functional object use, and that Jared could brush his own teeth. He watched Jared try to push his chair and reach out for the wall, a smile on his face the entire time.
He told me he wanted to know how this all turns out and gave me his email address. Dr. E said "I'm glad your taking him to Virgina, your dining he right thing. I'm so proud of you for fighting for him, keep pushing.".
We visited the 8th floor for a few minutes and left to pack up for Virginia.