When we arrived at the hospital (a long drive by car) we were told: "The Brian you know is gone. He will likely not live the night. He may live for a day or so. If he were to live, he would be in a vegetative state the rest of his life. We can promise you three things: Brian will not be in pain. He will be treated with dignity. We will do what we can to make him comfortable. Brian’s brain, that which made him Brian, is gone. There is only a small part of his brain-stem that is keeping him alive. "

The family was informed by the team of specialists that there was no hope for recovery and, after three long days and nights, a decision was made to remove Brian from life support. He had never been afraid of death and had only recently spoken of being an angel "again" someday.

With the help of the hospital Social Worker, we took fingerprints and handprints and cut a lock of Brian’s hair. What were to have been last photos were taken and tubes and monitors were removed to prepare for the ritual of death. The social worker brought a special quilt that had been made by hospital volunteers. We were told that Brian would probably live for just a few minutes once off the ventilator. His heart would simply give out and his struggle would be over. Brian’s mother, Maria, held Brian and his birth mother, Pat, held his hand. Extended family gathered at their sides. Much to the surprise of the medical team, Brian continued to breathe on his own.

Time went on and Brian was finally returned to his hospital bed. The medical team said that Brian might live a few hours. We waited and prayed, not knowing for what to pray. Church members and neighbors came for brief visits to offer support.  After a few days, family members brought Bruce’s fiddle from home and Bruce played Brian’s favorite tunes. Brian’s Uncle Vic played classical guitar. We all hypnotically watched the various monitors that were hooked to Brian’s head and arms and chest as if they were oracles forecassting Brian’s fate.

After several more days, the Intensivist in charge of the ICU, suggested that Brian’s insulin be withheld, but Bruce and Maria refused to deny Brian his medication. After a few more days, still breathing on his own and still in a deep coma, Brian was moved out of the ICU and onto the children’s floor. Bruce and Maria, continuing their vigil, were taught to take blood sugar measurements and to give insulin. Brian had surgery in which a feeding tube (a G-tube) was inserted directly into his stomach. Bruce and Maria were instructed in tube feeding. Brian needed to be moved about every 15 minutes to prevent bed sores as Brian made no voluntary movements. Only the involuntary movements of his heart and other vital organs continued. His lungs continued to move in the ancient rhythm of life.

When any of us would get hopeful that Brian might at least partially recover, our hopes were dampened. "Brian’s brain is gone," we were told many times during our stay in the ICU. We might hear about miraculous recoveries, but not from this type of injury they said. This was more like the damage that occurs in a drowning accident, rather than the type of injury resulting from an external trauma such as a motor vehicle accident. The chances of recovery of any kind were less than "one in a million." We were told that if Brian did make any recovery at all "It really would be a true miracle."

Brian was released to his parents’ care after a few weeks. There had been an option of putting him in an institution but this was rejected by Maria and Bruce. The medical team alerted us that Brian would not live long. Brian, we were told, would be susceptible to disease and would eventually catch pneumonia and die.

Besides their dire predictions, the hospital staff had been wonderful. They had put up with our large family 24 hours a day. They let us play musical instruments while we were in the ICU (this had been enjoyed by other patients and their families as well). They had cried with us and even prayed with us. They were all wonderfully kind.

Once at home caring for Brian felt overwhelming. Bruce and Maria were grieving, sad and exhausted. Brian needed to have blood sugar checked and tube feedings five times a day. There were two insulin shots daily. There were medications in addition to the insulin. Still in a coma, Brian needed to be re-positioned constantly, to avoid bed sores and to help prevent muscles from cramping. A series of passive range of motion exercises needed to be performed several times per day to keep spasms at a minimum and to keep Brian’s body from becoming terribly deformed. Diapers, it seemed, needed to be changed constantly.

Members of Brian’s Cub Scout troop pulled weeds that had grown in the yard during the three week stay away from home. Their Mom’s and Dad’s brought the family meals for over a month. Prayers and wishes of good will came from near and far.

We live in a state where help for the uninsured or underinsured is minimal and physical exhaustion coupled with feelings of helplessness and hopelessness took an emotional and physical toll on the entire family.  Eventually Bruce was forced for financial reasons to return to work, however Maria stayed home for several months to care for Brian during the day.

Few resources were available at that time. The State Department for Developmentally Disabled Children could not offer services because Brian was not considered to be rehabilitatable. A county nurse would periodically come to check for bed sores, to take temperature and blood pressure, and check blood sugar records. Diapers, a hospital bed and cases of a formula for the tube feeding were supplied. Other than the passive range of motion exercises that were done by the family, there were no efforts toward rehabilitation.

Although they lacked the requisite referral from the Department of the Developmentally Disabled, the family managed to get an appointment at Children’s’ Rehabilitative Services. Brian was examined by a friendly staff who offered what services they could.   An MRI was ordered to determine if surgery could in anyway be of help. Some tips on range of motion exercises. Measurements for a wheel chair. It was help most welcomed.

One bright spot, one ray of hope that sustained the entire family had been a dream that Brian’s Great- Aunt Jo Ann had reported soon after the injury occurred. Jo Ann had dreamed that she was in a large room and the floor of the room was filled with fish. The fish were full of water and somehow she knew that it was her job to stomp the water out of the fish. She stomped and stomped until she was so tired she could stomp no more, and still she continued to stomp. She woke up from the dream physically weary and mentally confused. Jo Ann intuited that somehow this dream had something to do with Brian but what had this strange dream meant? Jo Ann prayed for an answer. Returning to sleep, she found herself once again in this room, but it was empty. She instinctually knew that the fish had somehow returned to the sea.

A second time, Jo Ann awoke and a second time she prayed for some understanding. Jo Ann soon was flooded with feelings of peace and tranquillity. She was overtaken by a strong feeling that Brian would make a recovery but that it would take a very long time and would involve lots of hard work.. Jo Ann felt that the fish in the dream had represented the cells in Brian’s Brain that had been damaged because they had absorbed too much water. Some of us clung throughout this difficult time to the hope represented in that dream.

Starved for information, Brian’s grandmother, Suzanne went to the internet. A few moderately priced family centered brain rehabilitation programs were located. After much investigation, an organization called Brain-Net was contacted. Over the internet, Keith Pennock, the director of Brain Net gave the family instructions for stimulating a child who is in a persistent vegetative state (deep coma). We finally felt as if there was something we could do. These exercises consisted of doing things like rubbing the surface of Brian’s skin alternately with a cold pack and a hot water bottle. Brushing the surface of his skin with smooth textures, and rough textures. Offering him strong smells and putting small amounts of strong tasting condiments in his mouth. And, shining a bright light five times, on for a second, off for five seconds in each eye.

We also had a practitioner of Jin Shin Jyutsu work with Brian for about an hour every weekday morning. This is a laying-on-of hands healing technique from Japan that is growing in popularity in the world of alternative medicine.

Brian also received a form of Thought Field Therapy called Voice Technology which is a sort of acupressure technique on a daily basis. (Brian began receiving this therapy while still in the hospital.)

We played classical music including some CD’s that were specially recorded to facilitate right and left hemisphere brain integration. We began looking into sound therapy and purchased tuning forks but we have not implemented sound therapy at this time. We looked into color therapy and actually purchased some equipment. However, due to a lack of time, color therapy has not yet become a significant part of Brian’s rehabilitation program. We are still hoping to use this equipment when time permits.

Brian began a simple brain integration exercise designed by former physics professor, Steve Rochlitz. This exercise required caretakers to move Brian’s arms and legs for him in the beginning. Steve also recommended several nutritional supplements specific to Brian’s fragile condition. Brian began to improve.

Most important of all, Brian received constant love and attention from Bruce and Maria and extended family. Brian’s old friends would come in almost daily and talk to him telling him to "Hurry up and get better." Brian had a fighting spirit and gradually, Brian began to move on his own. First he would move only his right leg in a compulsive repetitive motion. Soon, he was adding his right arm. Brian seemed to be re-aquatinting himself with his body, repetitively touching knees, foot. ankles, mouth and top of head. Gradually, his right arm would help with the Rochlitz. brain exercises, touching his left knee at the appropriate time. At some point, it became apparent that Brian could hear, as he began to obey commands such as "touch your knee," and eventually "touch your left knee with your right hand." The Doctors were amazed. One doctor at Children’s Rehabilitative Services said "This can’t be the same child I just read about." (He had been looking over Brian’s case notes.) Then things started happening. Children’s Rehabilitative Services strongly suggested that the Department For The Developmentally Disabled become involved and begin to provide services for Brian. He was now considered rehabilitatable.

Now that he was considered rehabilitatable., Brian received services such as one hour of physical therapy, one hour of speech therapy and one hour of occupational therapy per week. Eventually Brian was able to attend his old school for a couple of hours each morning.

From the time Brian began receiving his tube feedings, one ongoing problem had been chronic and severe diarrhea. Brian would moan, draw up his legs and cry out in pain. It seemed as if the pain and the diarrhea might be related to the special formula supplied for Brian’s tube feeding. The formula was a corn and dairy (caseinates) based product and Brian had a history of dairy intolerance.

Although the family found little support from the medical community regarding the notion of a food intolerance, an alternative physician (who was an MD a DO and an ND) determined that this was the case. Steve Rochlitz who had developed the Brain Integration exercise, independently found intolerance to dairy, corn, soy and wheat through Applied Kinesiology testing. After several experiments, the family developed a dairy free, wheat free, corn free, soy free formula that duplicated the nutrients found in the commercial formula Brian had been given at the hospital. Several experiments which involved returning to the dairy based formula and then going back to the new rice- protein based formula proved that Brian did much better without the dairy based product. Brian began to improve at an accelerated pace, once he was on the new formula.

We went for our initial Brain-Net evaluation in October of 1998, nearly eight months after Brian sustained his brain injury. Already, Brian was quite improved, thanks, in part, to the rehabilitation exercises we were already doing. Bruce, Maria and Suzanne flew with Brian to Pennsylvania for a week. The Brain-Net team comprised of Keith Pennock, Val Pennock and their daughter Judy flew in from England. Several other US families of brain injured children participated in the new (for the United States) Brain-Net program. While no promises were made, we were given hope and a feeling that there was something we could do. After the initial five day evaluation Brian and his family flew home with a new exercise program tailored to Brian’s specific needs.

This program consisted of exercises to be done passively by groups of volunteers helping the parents move arms and legs in a synchronized pattern.  One exercise even involved hanging Brian upside down for a short time with a specially rigged rope and straps around his high top tennis shoes.

The volunteers loved their work, in part because each week they would be surprised by some small or large improvement. A second trip to Pennsylvania in March 1999 was a surprise to even the Brain-Net team. In the five months between the October visit and the March visit, Brian had improved in over 11 areas. He was now beginning to crawl on his own, could place one foot in front of another and walk with someone holding him in an upright position. He had begun to eat some foods orally (his favorite was, and still is peanut butter sandwiches. Fortunately Brian is not allergic to peanuts!). Brian seemed to be able to see some shadows at least some of the time. Brian already had learned to communicate in American Sign Language with a vocabulary of over 40 words thanks to his participation in public school.