I haven't been able to make as many updates as I would like due to our upcoming move. Since we need to get more help with Ben's care, we have decided to move closer to our original home where all of our relatives live. This is a 220 mile move across Missouri from our house we have lived in for 29 years. So, there is a lot to move and arrange. I'll give updates as I can. We hope to be all done and moved by the middle of May.
Ben continued to make slow but steady progress. By the end of June Ben only required the ventilator occasionally at night. During the day a passe' muir valve was placed over his tracheostomy tube to encourage him to speak. So far, we had only heard garbled whisper sounds that he made with an occasional yes or no. His tube feedings continued throughout the day. Ben began to really respond to his trips outside. Ever since he was little (see picture) he loved spending a lot of time outdoors.
Returning to the lobby of the hospital after spending some time outside around a fountain, we all told Ben how much we enjoyed our visits with him. We told him that a lot of people were praying for him to get better. Ben looked up at me and faintly whispered, "Tell God I love him." Evelyn and his sister, Nina were standing nearby and were as shocked as I was at hearing Ben respond. Ben began saying more and more whispered responses.
Ben's intensive therapy continued. He had difficulty in PT while in the standing chair and could only tolerate it for short periods. It was noted in OT that Ben's right arm was contracting at the elbow. A decision was made to begin serial casting his arm. It was straightened slightly while a plaster cast was put on. After 7-10 days the cast was removed and the process started again, straightening the arm a little more each time before another cast was put on. This was painfully repeated several times until his arm was nearly straight again.
more to come...
Ben began his first stay at MRC in the end of May, 2002. He was first admitted to the ventilator floor, but only stayed there a couple of days. Since he was doing some breathing on his own during the day, he was transferred to the TBI floor. Here he could begin much needed therapy.
We drove down to see Ben the following day. He was in his room sleeping. The ventilator was hooked up and his G-tube was hooked to his tube feeding pump. His nurse told us that Ben had received some range of motion therapy earlier and that Ben had been suctioned several times to remove secretions from his lungs. We all just pulled up chairs around his bed and sat with him.
Since Ben was now over 240 miles away from us, we discussed how best to stay near him. We began coming down as much as possible and stayed at a motel. Michelle, Ben's fiance', decided to move to Mt. Vernon so she could be with him daily. She found a small house to rent that was only a couple of miles from the hospital. We bought her a sofa sleeper that we could use when we came down to visit.
In June 2002 Ben started looking toward a sound made before him. He still wasn't tracking objects, but this was an improvement. A wheelchair was brought in for him and he started sitting in it for short amounts of time. He could tolerate being off of the ventilator for longer amounts of time during the day. So, when the weather was nice we would wheel him out for short walks around the hospital grounds. We occasionally had to take his tube feeding pump with us. It was on a large IV pole with wheels. It kind of limited where we could go but it was nice to get Ben out for awhile. Near the end of June we went with Ben to his speech therapy session.
Ben was not able to speak at this time and we didn't know what he was aware of around him. The sessions would consist of the therapist seeing how Ben would respond to verbal cues. She would point to one of her fingers and try to get Ben to respond by doing the same thing. He would sometimes respond with a gesture and sometimes not. There was no way of really knowing if Ben really understood what she was saying or just mimicking what she was doing. On this day she tried something a little different. She had a large flash card and on it was written, "raise your eyebrows". She showed this to Ben to see if he would respond. Nothing happened. She tried to direct his attention to the card, but Ben would only tap on his tray. She told him to look at the card and try to read it. Finally Ben concentrated on the card. Slowly, he twitched his eyebrows up! Our hearts leaped for joy. That was the first time we knew that his reading ability was still there, and we knew that with hard work, Ben could improve.
more to come...
A few days after Ben's trache and G-tube were placed, Ben was moved to the step down unit across the hall from the ICU. He was in a stable condition but still unresponsive, except for abnormal posturing to stimuli. The hospital staff wanted us to begin searching for a long term care facility for Ben. Wanting to make sure that Ben would get the therapy and specialists that he would need, we began looking for the right place for him. After checking out many facilities, the Missouri Rehabilitation Center seemed like one of the best. Evelyn, Michelle, and I visited MRC to view the facility. We were impressed with the staff and grounds. It was originally established in 1907 to treat the tuberculosis outbreak. Setting on about 60 acres in the small town of Mt. Vernon, MO, it has been updated and is now the largest TBI care facility in the state.
Arrangements were made to transfer Ben to MRC via ambulance, but he had a setback. Running a high temperature, a blood test revealed that Ben had MRSA in his blood. This required a vancomycin IV for several days to treat the infection. During this time Ben seemed to improve somewhat. While he still could not track a moving object, he began to look toward a person standing before him. After nearly two weeks of antibiotic treatment, Ben's MRSA infection was cleared up and he was transferred by ambulance to MRC, about 240 miles away.
more to come...
An interesting article on how certain antidepressants may stimulate the growth of new brain cells.
Its been nearly five years now since Ben's accident on 4/16/2002. Evelyn, my wife and Ben's Mom, heard about a bad accident on the radio on her way to work but never thought that it would be part of our family involved in it. Since I work the night shift, I was at home sleeping.
The pictures here and on Ben's website of the accident were taken by a news helicopter for one of the local TV stations.
After Evelyn and I received word to go to the hospital, we both drove there as quickly as possible. When I arrived Evelyn and Michelle, Ben's fiancé, were both with Ben. He was in the ICU hooked up to life support and in a deep coma. A tube ran from his mouth to a ventilator to breath for him. An ICP monitor was hooked to signal when his cranial pressure was too high and meds were needed to lower it.
The doctors gave me a grim report on Ben's condition. They weren't sure if he would make it. With such a violent accident, shearing of the brain nerves is a real possibility. Shearing is caused by the violent head movement that can take place during an accident. The nerves of the brain can be literally stretched and ripped. This can result in death or a persistent vegetative state. Miraculously, Ben had no other life threatening injuries that were evident. Much later during his therapy he was found to have a broken collar bone that had gone undetected.
Each day the doctors told us how hopeless Ben's prognosis was. Ben would respond with abnormal posturing in response to stimuli. The doctors would then give us a percentage of chance of recovery. Each day the number would get a little lower. We were at Ben's bedside almost constantly. After a week Ben began to open his eyes. He didn't seem to see anything but we thought it was a good sign. Since Ben wasn't tracking objects with his eyes the doctors saw this as another bad sign. Finally we had to make a decision. Ben couldn't be left with an ventilator tube in his mouth and a feeding tube in his nose much beyond ten to fourteen days or strictures would begin to form around the tubes making their removal very difficult. A tracheostomy had to be done and a G-tube inserted.
We knew that Ben did not want to be kept alive in a vegetative state indefinitely. He was the charge nurse at a nursing home and had told us before that he wouldn't want to live that way. On the other hand, we knew that Ben is a fighter and wanted to give him a chance to pull through this. Our decision was complicated by the doctors and even the chaplain encouraging us to "let him go". We decided that two weeks from the accident was too soon to make an irreversible decision, in spite of what the doctors were telling us. A permanent trache and G-tube were placed allowing the tubing to be removed.
more to come...
