Freedom House Survivor Stories Part 1

JAMES KEVIN LEWIS

Life after Brain Injury from a Mother’s perspective - By Donna Lewis

It was Sunday April 7, 2002; I was hosting a Bible study at my home for about 12 people. James was getting ready to leave to meet some of his friends for the evening. He greeted everyone there, pleasant as always, gave me a hug and kiss and off he went; I had no idea that would be the last time I would see James as he was then.

When James failed to come home I tried reaching him on his cell phone. Two days went by but he had not returned any of my calls. I began calling his brother and some of his friends to see if they had seen him or knew where he might be. Then began leaving messages on his cell phone that were not so kind asking him why he wouldn’t at least get back to me so I would stop worrying. During those two days I had to work. At the end of the second day I was too tired to listen to my voice messages. I prepared something to eat, sat down and tried to relax for a while. Prior to going to bed around 11:00 p.m., I remembered I had not yet checked the messages.
That was when I first heard the message from a social worker saying; if you have a son whose name was James Lewis born on September 23, 1974 would you please contact UCSD Medical Center Trauma Ward in (Hillcrest) San Diego immediately. Upon calling, I learned that James had been in a near fatal car accident, and they had been trying to reach his next of kin because of the seriousness of his injuries. He had arrived at the hospital by ambulance around 2:30 a.m. on Wednesday, April 10, 2002. James was not carrying emergency contact information so they did not know how to get in touch with his family. Thankfully, one of the young men who was in the truck with James at the time of the accident remembered our home phone number and was able to give it to the attendant at the hospital.
After contacting the hospital, they assured me there was nothing I could do that night. They said James was in critical but stable condition. I felt from what they were telling me that he would be okay through the night. I called my eldest son John to let him know what had happened. I asked if he would go with me the next day to visit James. I sent out an urgent email to our family, friends and church family asking everyone to begin praying for James, this list consisted of about 40 people in the beginning but grew to over 250 prayer partners that we still email updates to today. I began praying too but as you can imagine sleep was not something that came easily that evening and thereafter.
I contacted the hospital first thing the next morning and learned that James had been driving under the influence of alcohol and marijuana and even though his alcohol level was very low, since he had two friends in the truck with him it was considered not just a “DUI” but a “felony DUI”. Since it was a felony we were told we had to contact the San Diego Sheriff’s Department to gain permission to visit James. He had been placed under house arrest and had a guard assigned to his bedside 24 hours a day.
James had been traveling at a speed of approximately 70 miles per hour on Interstate 8 East-bound towards the 15 North-bound and had fallen asleep at the wheel. I was told by the detective that at that speed crashing into a tree or anything stationary is was like hitting a brick wall and the speed would be calculated, at the time of impact, double the speed in which he was traveling, which meant he hit the tree at 140 mph.
John and I went downtown San Diego to the main Sheriffs station to obtain permission to visit James, we were told that because of the offense only 2 people would be allowed to visit at a time, once per day and that our time would be monitored for 45 minutes each visit. Additionally, we would only be able to see him two days per week and once on the weekend. This was normal for prison visiting hours yet this made us feel as if we were the ones in confinement.
We were not sure what condition we would find James in when we arrived at the hospital. I remember having to be buzzed into the trauma ward. The nursing staff, doctors, and social workers began gathering around to prepare us for what to expect before seeing James. It was a very busy emergency ward. James’ room was very dark, no lights other then night lighting, and lights from the many instruments and machines.
The noises coming from them, with beeps, buzzing and blips, were a little overwhelming in the beginning. James had tubes in his mouth for breathing, tubes down his nose for feeding; he was being given nutrition, antibiotics, pain relievers, water, and everything you can think of to keep him alive. There was a nurse stationed at his side monitoring his condition every moment of the day. The nurse’s shifts were 12 hours each so they would rotate only 2 times per day.

Our first sight of him revealed his head completely wrapped in bandages, it was swollen to three times its normal size, about the size of a basketball. He was a reddish, purplish blue color and the swelling was throughout his body. I was told his condition was critical. They did not know if he would make it through the next night. He had fractured his pelvic bone in three places. Other then the swelling, and discoloration of his skin, his physical appearance was better then I had expected. He only had one area on his left upper forearm where there was “road rash” caused from glass from the truck window which had shattered upon impact, the glass had been removed from his arm. What was going on internally was a completely different story.

We were told he was in a drug induced coma to help him tolerate the pain; therefore he would not be aware of our presence. I am sure you have heard that the last thing to go is the hearing and I remember leaning over the bed to talk to him to let him know we were there and that we loved him and to hang on. I told him repeatedly not to give up that God was in control. Then when I leaned in to give him a kiss on the cheek and touch his arm the guard immediately asked me to move away from the bed that I was not allowed to touch him or have any physical contact. He had been placed under house arrest because of the felony and house rules were absolutely no physical contact. I told the guard that if he thought I was “not” going to touch and comfort my son during what might very well be his last days he would have to arrest me as well. Talking and touching are two very important ways of helping your loved ones in the healing/recovery process and no one was going to take that away from me.

James was shackled to the hospital bed at the right ankle. They told us this was routine with the felony offense. I guess they feared he might walk away while under the medically induced coma and a pelvic that was fractured in three places.

James was hooked up to every type of machine possible, from monitors that measured his level of pain, heart beat, blood pressure, breathing, oxygen levels, and the draining of excess cranial fluids on the brain. He had a morphine drip so when his pain became too intense it would automatically begin entering through one of the tubes. The doctor had to drill holes in James’ skull twice (the first one was not in the right area) and placed a shunt in the hole to drain the cerebrospinal fluids and an enormous amount of blood from the hemorrhage on his brain. His brain had swelled so badly that they were trying to help relieve some of the pressure hoping to prevent further brain injury.

The next day I spoke again to the captain at the sheriffs department and was able, after much pleading, to arrange daily visitation any time of the day, and for up to two hours at a time. At this point since our visits were still so precious, I only allowed family, our Pastors, prayer partners and a couple of his closet friends to visit. The visits from his friends were monitored and could only happen if they contacted me or my eldest son John first. I did not want our family time with James to be used up by curiosity seekers. This was our time to pray for healing or say good-bye if need be. Even though we were all praying for the best for James we were also preparing ourselves for the worst. We knew God had control over the situation but we did not
know His plans.

Over the course of the next couple of days the doctors were trying to decide how and if they could perform surgery on his pelvic to fuse the bones back together. There was a gap in one area that was about ½ inch in width. They began preparing to do surgery when James took a turn for the worse, all the bells and whistles began going off in his room; they immediately removed me from the room and I could see the look on the nurse’s face. She was losing him. I immediately made a few phone calls and asked for immediate intense prayer. Once he had returned to a stable condition they decided the best thing to do was place him in traction so the pelvic bones would have a chance to heal properly rather then take a chance on surgery.
James was now not only attached to every machine possible he now had a ½ inch bolt screwed through his left knee area and his leg was held up in the air at a particular angle and level for proper healing to the pelvic.

You might be thinking what could possibly happen next? In order to keep James’ vital organs from shutting down which they were beginning to do and to keep him from getting serious bed sores from lying in one position they had to do something about his movement. They ended up placing him in a bed that rotated back and forth at a speed conducive to the injuries, but in order to do this James would have to be strapped down completely to the bed. Now in addition to all the tubes and wires he now had two clamps on his head with a strap going across his forehead to steady it and keep it from moving back and forth from the motion of the bed. Straps were attached to both legs and arms, torso, and stomach area on his body to keep him from moving too far from one side to the other or from falling out of the bed. They discovered they could not rotate the bed too far to the right or James’s vital signs would begin to show that he was experiencing an enormous amount of pain which caused all the machines to begin flashing, buzzing, and ringing. They had to adjust it so it would rotate only to the left and then come back to where he would be lying flat again so this rotation went on for several weeks.

After the seventh day I called the detective who was now handling the felony DUI case and told him about the condition James was in and that James had been shackled to the bed since he entered the hospital and that there was still a guard 24 hours a day. I asked if there was anyway this could be changed so that his family and friends could come and say their last good-byes should this become necessary. The Detective was alarmed at this and turned out to be the nicest and most compassionate detective, he could not understand why James was guarded and shackled with the condition he was in and immediately ordered them both to be removed. This now allowed us to visit any time of the day, every day, and for as long as we wanted. Praise the Lord!

James’ confinement in the Trauma ward lasted about 5 weeks before he began to improve slightly. One by one the life support systems and machines were being disconnected. The swelling of his head and brain had reduced, the shunt was removed from his head, the rotation bed was stopped, and the traction and restraints had been removed. They placed a tracheotomy in his neck for breathing and a PEG tube was inserted into his stomach for liquid food consumption that he received round the clock. The doctors told us that James’ brain had been severely injured known as TBI or traumatic brain injury. This was caused from a serious jarring or impact to the head subsequently causing the swelling; they said he would be a vegetable
for the rest of his life. [Oh yea of little faith]

He was moved from the trauma ward and transferred to an intensive care unit, where he would continue to be monitored 24 hours a day. He would stay there until a suitable long term facility could be located for him to be transferred to.

James’ eyes were open which is normal for this condition but his bright blue eyes were dull, no shine, no life, and this is what we were told to expect of him, forever. He could not even follow you with his eyes around the room. He did have his hearing from what we could tell and if you moved to another area of the room he would try to follow the sound of your voice but he was very slow in responding.

It didn’t matter what I was hearing from the doctors and nursing staff I never believed James would be a vegetable, God never revealed to me that he would not heal James. Christ promises healing and I knew in my heart no matter how long it would take that God would heal James for His Glory.

Thinking back I believe that part of the time I was numb. I knew I would have to be James’ eyes and ears if I were to keep him alive and give him every possible chance for survival. I found that I would have to speak out for him in every circumstance since he could not do it for himself.

James did not know who he was, where he was, or what had happened, he didn’t have a clue who I was or anyone else who came to see him. He had no idea who came in and out each day and would just stare at you with this blank look and you could tell he was trying to figure out who you were. He never smiled and that wonderful contagious laugh he had may never be heard again. It was frightening to see someone you loved, that you had given birth to 27 years earlier, with absolutely no awareness of whom he was, let alone who you were. Every time I came into the room I had to reintroduce myself even if I left for just a minute, this was all part of his memory loss. He would only be able to remember things for a second then we would start all over again.
The loss of long term memory meant all his growing up years were gone, remembrances of any of his family, gone. It can be described easier if you think of having amnesia. The brain injury had affected the Temporal Lobe and Frontal Lobes. The Frontal Lobe controls planning, problem solving, initiative, judgment, self-awareness, organization, attention and personality. The Temporal Lobe controls a person’s memory, language, organization, and hearing. James’ motor skills, balance, and coordination were also affected from the injury.

This meant James would be in therapy for a very long time, we now needed to learn how to teach the other side of the brain to do the things we take for granted, like reading, writing, talking, eating, walking and even breathing. He would be learning how to do all these things all over again. One thing I’ve learned in all the reading about brain injuries is that this condition is not called brain damage, but a brain injury. In short it means that a part of the brain that has been “injured” may not function in the same manner as it did before the injury.

Everything James was used to doing in his everyday life would require retraining to another part of the brain. You hear all your life that we only use 10% percent of our brain in our life time so we had 90% percent to work.

James began receiving physical therapy in about the 5th week on his legs, arms, hands, and feet to keep the muscles from contracting more then they already were, so he would not return to a fetal position. The physical therapists at the hospital were scheduled 2 times per day 3-4 times per week but the family (me) was expected to do it on the other days.

On May 31, 2002 about 7 weeks after his accident, James was moved to a facility that dealt with patients who required 24 hour care. The Sharp Coronado Sub-Acute Hospital took patients who could not function on their own and required being fed through tubes and patients who could not breathe without assistance.

At that moment our lives began to change even more. We had made it through what I thought was the worst part and James had survived! But what had he survived? It was now up to God to decide the extent of James’ healing and where He would take us from here. Our family had become divided over these past few weeks even though most everyone showed support verbally to me, some thought I should pull the plug on James. It was a very difficult time for everyone. This tragedy was too close to home for many and they did not want to see James in that condition or accept the fact that something as tragic as this could happen to our family, so they dealt with it in their own way, some by not coming around, others would come but it was very hard for them to see James in that way.

I found myself in a whole new world of care and support and even neglected my own life to become a staple in James’ and the lives of my oldest son and his family. I was determined that I would stick with him no matter how long it took for his recovery. I felt this is where God had intended for me to be. Even though many doctors, pastors, family members and friends thought that I was giving too much towards James’ recovery, God had not told me to stop. I never felt that God was giving up on James so how could I? God promises healing in the Bible and I lived by those words. I didn’t just believe it I knew He would heal James!

Over the next several months I visited James every day after work and on Saturday and Sunday. I would eat dinner or lunch at the hospital spend 2-5 hours with him, reading short stores, or from the Bible, and bible verses people had sent that they claimed for his healing. I read stories from people who shared their stories with me of similar circumstances giving me encouragement and being told never to give up. I talked to him constantly, telling him every day what the date was, that I was his Mom, who he was and why he was in the hospital. Months went by but I never got tired of being there for him. I had constant battles with the doctors and nursing staff over his care, therapy and recovery during this time and it was physically and mentally challenging.

I mentioned earlier that I became James’ eyes and ears and his spokesperson. The hospital had allowed his legs to contract because they continually told me he would not recover. They suggested tendon release surgery which meant he would not have the use of his legs when he did recover. I fought for daily physical therapy for James and it was a constant up hill battle since the doctor continued to tell me over and over again James would be in a vegetative state for the rest of his life. I rejected those words over and over again to the doctor and staff at every mention of it.

On some days when I visited James I would find James lying in wet messy clothes and bed sheets because the shift going off duty would leave the mess for the oncoming shift. Some of the Certified Nursing Assistants (CNA’S) would find ways to aggravate the patients if you complained about their care. I started making formal written complaints to show them I meant business. On one occasion I found James had scooted in his bed, and somehow stuck his head out through the guard rails and no one could tell me how he had gotten that way or for how long he had been in that position. Never leave your loved ones care to the facility and never feel you cannot say something about the care your loved one is receiving. Twenty-four hour care does not mean some one is with them 24 hours.

I gave the medical staff information that I had accumulated from reading and studying about treatments and regarding the do’s and don’ts of brain injury. Much of this information came from the Ranchos Los Amigos National Rehabilitation Center for Brain Injury in Downey, CA. I wanted the staff to know what to expect, what the symptoms were, and different degrees, or levels, of cognitive and behavioral functioning before James went through this, so they could be prepared. It seemed I knew more then they did because I studied and read up on everything I could get my hands on. The doctors and staff would not allow the information to be distributed. Even though the staff claimed to have experience with brain injured patients I found they only had experience with those who remained in comas and received little or no attention from
staff members; or patients who were not receiving stimulation, love, or touching of any kind from a family member. Also, those who did not have a loved one near to support them were not being cared for properly, they were kept on medication that would keep them quiet and sleeping.

I had to fight to have James taken off the morphine he had been receiving from UCSD months after his transfer to Sharp Coronado. He was still receiving daily doses even though there was no indication that he needed it. I had to fight to get them to have a dentist come in to take proper care of his teeth since they had him on a medication for seizures that ruins the teeth and gums. Again the doctor refused to take him off this medication even though he had never had a seizure. He contracted an infection in his tracheotomy and his throat was so swollen it was cutting off his breathing and no one noticed it during their shift. When I arrived that particular evening and brought it to their attention the fever was already registering 103.5 degrees, by the end of the night it was registering 105.2 all I could do was pray.

When James was able to view television occasionally I had to fight to get an optometrist to check his eyes. James had worn glasses and/or contacts for several years and could not see without this assistance. I also had to fight with the staff to be sure the program was not MTV or Spanish stations. I wanted something soothing or nothing at all. Working with Medi-Cal and the nursing staff sometimes became unbearable; you had to learn which of the battles were more important to fight harder for.

Everything over the next eleven months was a battle. I always believed, and never lost faith, that James would be restored to having a healthy life because I believed and still believe in the healing power of God.

I had placed a journal in his room so that when people were able to visit they could write something to him.
Then when I arrived each evening I would read to James who had visited that day and what they had written. This was part of helping him to remember who these people were and hopefully help him to restore some of his past. I also left disposable cameras in the room so pictures could be taken with him and his friends. I made an album for him so he would be able to see the picture and who I was referring to.
Then one day about seven months at this facility I was standing over his bed reading from his journal, when all of a sudden he reached up with his hand and turned the journal towards him so he could see it. This was the first sign of acknowledgement, of any kind, from him since his accident. The doctors who believed only in science never showed any hope of his recovery even after this happened. We reported earlier symptoms of similar signs of waking up, but they told me that it was just a spontaneous response.

He was beginning to wake up, but now I had to convince the doctors of that, note they were not telling ME that he was waking up I was telling them. I began placing the journal in James’ lap, propped up on a pillow up against his legs in front of him so he could see it. He began turning the pages on his own and looking at each page for what seemed to be a very long time. I am sure he was trying to focus and read. I would read to him as he turned the pages and then show him the picture of the person who wrote it. James was still not able to speak or communicate with us in any way and he showed no emotion.
I reported these incidents immediately to the nursing staff and had some of them come in to view this marvelous awakening. The staff was all very excited for James but the doctor continued to tell me it was only a reactive response.

I tried to get him to nod his head for yes, or for no, when a question was asked but he did not respond, he just stared at you. I used children’s books to read to him and teach him to recognize the words. He was unable to speak since he had the trach still in his throat so I started teaching him sign language. This seemed to work and was fun for both of us and he was finally able to communicate a little to me. Of course everyday we had to go over what he had learned the day before, and we would try a new word or sentence each day.
The speech therapist began to see if James could swallow and tolerate soft foods. They began slowly giving him swallow tests to see if he could sip fluids through a straw. He was finally able to begin drinking thickened drinks, they were deeply concerned that he might aspirate with taking in fluids. They decided to begin testing James for voice by attaching a Pussy Muir valve to his trach. They did not know if his vocal cords would still function. After a couple of months the therapist found this was working so it was time for him to request that the doctor remove the trach that James now had in for a year. He had several swallow tests and after several weeks he was actually able to make audible sounds. He even began to say yes and no and Hi Mom. Do you know how wonderful it is to hear your child say “Hi Mom” after not having a voice for over a year? Praise is to God!

We were on the road to a very long recovery process and I had no idea what was ahead of us, not that it mattered I would have been there no matter what. In December of 2002 he had been reevaluated and we were told that the social worker would begin the paperwork for James to be moved into a rehab center.
Between paperwork and doctor evaluations this process took about 2 months, during this time the trach and the feeding tube had been removed and in March of 2003 James was accepted at Sharp Memorial Rehabilitation Center in San Diego.

The next five months brought intense physical therapy. Because his legs had contracted he would be placed in leg braces to be worn all night, he would be stretched, and pulled, and pushed. He had to learn balance, sitting, standing, and walking. Of course none of this came easy since he had forgotten how to do all of this and it would be months before he would be able to do any of it on his own. He was taught how to maneuver a wheel chair which was now his mode of transportation.

Speech Therapy was similar in that he needed to learn how to speak, read, write, solve math problems, etc. His speech needed to be clear and he had to practice pronouncing each and every syllable. His speech therapist tried something new with James that she had never tried with anyone before. In order to get him to communicate with others she set him up across from the nurse’s station with a table and items of candy, licorice sticks, cookies that she would supply. He was then supposed to sell these items to anyone who passed by. He became very good at this and she let him keep his profits. It got to the point people were bringing in home made items and letting him sell those as well. He began to communicate with others and this process actually helped his memory and his ability to add and subtract to give the right change to the customer.

In Occupational therapy he would learn to dress himself including putting on socks, and shoes, pulling shirts over his head and pulling up his pants all on a bed or chair. He would learn to use utensils to feed himself, hold a tooth brush and brush his teeth, comb his hair, and take a shower, all the things we do every day without a second thought. We had transfer boards that we would use to get him from bed to chair or car.
We now buy tennis shoes that have Velcro closures in order to help him with this process. You begin adapting to his disabilities. This process is very hard for a parent to watch because you want to help him but can’t because you know he has to do it himself.
James was released from Sharp Memorial to in-home care on July 4th, 2003, he calls this his
Independence Day and that it was!

Now it would start all over again at home, we had to set up in home nurse visits; physical, occupational, and speech therapists to come to the house for the next several weeks. I had to hire a care giver who could be with James from 7:30 a.m. to 5:30 p.m. so I could maintain my job. The first four months we had three different care givers, two of them were trained nurses, and one was a certified nurse’s assistant but none could handle the situation at hand.

We finally found one that was willing and able to work with James who had absolutely no credentials and was use to being around someone with a brain injury. Her father had been injured 17 years before and suffered from a brain injury so she knew what to expect.
We worked out a schedule where James would eventually attend an ABI (Acquired Brain Injury) school Monday through Thursday from 9:00a to 12:00 noon. From there he would go to out-patient rehab at Sharp on Monday and Wednesdays where he received Speech, Physical, and Occupational therapy from 1:00 until 4:00p. On Tuesday and Thursday he received additional physical therapy at The Challenge Center between 2:00-3:00 p.m. On Fridays James attends an adult day care center where he also receives physical and occupational therapy. There he gets to play board games, watch movies, and do arts and crafts with other adult patients. During the summer months he attends a swim class where he is learning balance, swimming under water, and floating on his back. He loves the swim class he feels a lot of freedom to be able to walk around the pool on his own. We still maintain most of this schedule today, 6 years after the accident.

James is walking with a walker now and is beginning to walk around the house without any apparatus. He has walked up to 200 steps even on grass and up slight inclines with crutches, he is able to walk between two people holding their hands and walking along with them for short periods of time. He walks into church, restaurants, school, and doctor appoints all with his walker and without the use of his wheel chair. His favorite thing to do is ride around the markets in the mobile carts when we do our grocery shopping.
James is learning independent living skills some of these are doing his own grocery shopping and writing his own checks to pay his bills, quite an accomplishment since we were told he would never recover from the vegetative state…

Update: we are now celebrating our 6th year of recovery, James is using a 4 wheel walker, and he continues to attend the ABI School and Speech Therapy at SDSU. His communication skills have increased immensely and his ability to get around on his own improves daily. He walks around our home without the use of a walker but as we call it he is wall-walking.

James has great goals and dreams ahead of him which include, having a girlfriend, working, purchasing a car and driving again. He longs to be able to drive to the beach with friends and surf, watch the sunset, put his feet in the sand.

Some of these dreams may never come to fruition but it will not be me who discourages him from trying to accomplish each and every goal he has set for himself. James has never given up on his healing which is why he continues to make progress from his brain injury and make advancements in everyaspect of his journey to recovery.