Personal Information

These pages, most of which were written by Jerry after his accident and prior to his death, are his view into what happened and what he could do about it.

This is a very private view into the life of a young man who lived that life until the day he went to a better place.

Perspective 

  My father, on behalf of my family, addresses the ups and downs suffered by the "other victim" in this accident, my family.  An overview of my injury from the origin to the present.

The main purpose of this "overview" is to, hopefully help others know what to do and what to expect from the moment that phone rings, or you hear the words, "one of your family members has been hurt in an accident." 

Trauma Center

  I don’t think I will ever forget the phone call from home the day of the accident, "Jerry was doing back flips on the trampoline and landed on his neck, the boys think he may have broken his neck, he’s on the way to the hospital now."

  My heart raced a mile a minute, I remember saying to myself "My God what have I done to deserve this, first my mother’s cancer, then Kevin’s being widowed with motherless babies in a car accident, Troy’s industrial accident, and now Jerry. How much more can I take?"

  The mind wanders aimlessly through the scenarios, from minor injuries to paralyzed, little did I know what was awaiting me on my arrival at the hospital.

  Upon entering the trauma center and providing my name, I was immediately hurried to an adjacent "family room", and told someone would be there to assist me in a few moments. While praying softly, the sound of an electric scooter caught my attention. Remembering that the social worker in my previous trauma accidents with sons Kevin and Troy, had a scooter, I immediately associated that sound with the worse accidents, I looked up, as we recognized each other, my eyes filled with tears because I now knew the accident was very bad.

  Given the life threatening condition of my son at this time, I could not have requested better assistance. This was the epitome of a social worker who seemed to get the worse trauma accidents to deal with, at least in my case, and still was able to provide comfort to the "other victim", the family.

  The social worker left to talk with the doctors treating Jerry, and as if by magic, the admitting office arrived with their questionnaire’s to complete, financial arrangements or at least questions about. That’s their job I understand, they seem to sense when the family is under the most duress, and in most cases will simply "sign on the dotted line without regard to what the legal document they are signing actually encompasses and how it may relate to their own financial well-being. At no time was I informed of the legal ramifications of the papers presented to me that awful evening in June. I had the presence of mind to sign ONLY the medical authorization to treat my son’s injuries, WHICH I STRONGLY RECOMMEND TO ANY FAMILY IN A TRAUMA SITUATION. DO NOT SIGN ANY FINANCIAL INSTRUMENT UNDER STRESS, HAVE THE "PAPERS" FAXED TO YOUR ATTORNEY, WHO CAN ADVISE YOU NEXT DAY.

  The social worker returned with one of the trauma team to inform me about the injury and to tell me for the moment, my son was finally "stabilized." The doctor advised my son would be moved to the trauma recovery room shortly and then to the neurological intensive care unit on the second floor as soon as the room was prepared.

  It seemed like an eternity but in reality only a few hours had passed before the social worker informed me that Jerry would be passing by the "family room" on the way to his "room." I saw Jerry as he passed by however small a glimpse it was, but nothing would prepare me for what I was to see shortly.

  The prognosis was delivered by two of the surgical team that performed the operation to stabilize Jerry’s neck. After the typical introductions and a brief overview of the surgical procedure, the long awaited but dreaded aftermath was finally spoken: "Jerry is a C4-C5 quadriplegic, paralyzed from the neck down. Chances of his being able to care for himself or walk again in the future, slim to none."

  Those words stated with such casualness by the medical team, who promptly excused themselves, reminded me of the other accidents of Kevin and Troy. My mind wandered with thoughts of how and what I could do to help my son, my family. My aging and frail mother, how was I going to break the news to her. I looked at Jerry’s mother and the tears and sadness that was fast becoming part of her facial makeup was apparent. I remember lowering my head as I opened my Prayerbook, reciting the prayer prevalent on that page and asking for help in knowing what to do from this time on. The silence was broken by the nurse’s voice saying we could now see Jerry.

Intensive Care

  We slowly made our way to Jerry’s room, apprehensive but not prepared for what we would now see. Immediately upon seeing my son, tears flowed freely from my eyes down my cheek. The head support or halo, screwed into my son’s skull assisted by weights, necessary to hold his neck in the correct position, overwhelmed us. My God, his entire world would now be the ceiling directly above him. The rotating bed, its tie-down straps, necessary to alleviate pressure sores, was completely foreign to me. The tubes in his mouth, nose; needles in both arms; equipment everywhere; lights, sights, sounds abound from the monitors to control and perform the bodily functions we take for granted. Breathing, such a simple task, has to be done for him.

  I will never forget the beautiful young woman (Mary Beth), who became one of Jerry’s nurses during his stay in the intensive care unit. A strong sense of caring about the responsibilities she was burdened with on her shift. She saw the bad accidents, the patient’s misery and suffering; the family’s suffering and still had a smile on her face, quite a contrast to most who exhibited the starkness of reality.

  Jerry’s mom and I alternated staying with him, she took the day shift and I opted for the night shift. The first several days went by without incident, then without warning, one of the tubes inserted in Jerry’s throat, either by biting or material failure, broke. To this day, I don’t know what made me look up from my Prayerbook at Jerry, but I noticed a blue tint on his lips, closer examination showed the anxiety in his eyes, he was not breathing, the ventilator was not working. I screamed for the nurse, who came running and then all hell broke loose. The nurse was on top of Jerry trying to insert a new tube down his throat. The room quickly filled with doctors and nurses, who promptly requested I leave the area while they tended to my son.

  An hour or so passed, maybe more, then I was allowed back in the room. The doctor on call who apparently had forgotten the word "empathy" and naturally its meaning, a fact of life I found commonplace in the hospital environment, finally explained the emergency to me and that ended the anxiety for that evening. That incident required the ventilator usage for several weeks longer than what was expected and it took several months for the damage to Jerry’s throat and vocal cords to heal itself.

  I have never understood why doctors are so begrudgingly reluctant to express empathy for the "other victim, the family." It was prevalent in each accident mentioned above, promptly reared its ugly head in this accident, and was the most common thread I heard in the months my family occupied the waiting room with Jerry’s injury, a constant "bitching" about the doctor(s) not telling the family anything.

  Keeping the family informed about their loved one would relieve so much of the stress the other family members have by "not-knowing." INSIST ON KNOWING AS MUCH AS YOU POSSIBLY CAN ABOUT THE CONDITION OF YOUR LOVED ONE. DO NOT TAKE NO FOR AN ANSWER. IF YOU HAVE TO, GO TO THE SUPERVISOR OR DEPARTMENT HEAD. COMPLAIN IF YOU MUST, BUT GET THE ANSWERS YOU NEED. I can assure you from first hand knowledge, what precious little sleep and relaxation there is after an accident or illness requiring hospitalization, will come much easier.

  Finally, Jerry was able to breathe on his own and the ventilator was removed. The dreaded but necessary "halo" was next albeit without its own problems. I can still recall the violent head shaking that Jerry did when he woke up and realized something was in his head and he wanted it out. A constant battle existed over the next few days, Jerry determined it was coming out and the family and nurses even more determined it wasn’t. I have to say here, "I believe it was a draw." He succeeded in knocking it loose on several occasions but I feel he finally got the message to leave it alone given the pain he suffered each time to replace it in his skull.

  A great day was had by all when the "halo" was removed and Jerry was relocated to a "less intensive area" of the recovery area. The family was able to take a slight "break" with the move. Twenty-four hour shifts became morning and evening stays. The new nurse regime included apparently a nurse from hell. I don’t know where she trained but she definitely failed the course on "how to win friends and influence people."

  One of my visits included the bathing process and to my shock I see a "gaping hole" in my son’s hip area when he was turned over. Naturally, the nurse from hell was on duty and my continued requests for an explanation by a doctor fell on deaf ears. In the months that Jerry was in the hospital my anger with the medical profession surfaced on several occasions, this was the first one and I was mad as hell. It took some serious hell raising but I finally got my answer, the bone from the hip was used to strengthen the broken vertebrae in my son’s neck. All of this anger and stress would not have been necessary if the trauma team that did the surgery in the first place would have simply told us the night of the accident this would be done and not let the family find the "hole" in the boy’s hip area. THIS IS AN EXAMPLE OF WHAT I MEAN: GET ANSWERS!

  The next few weeks passed quickly and the day of release from the intensive care neurological surgery unit was a joyous occasion. Cake and ice cream was provided to the entire team, a small gesture of appreciation and thanks on my son’s behalf, which apparently was well received by those in attendance. Happy yes, but such a long way yet to go in the recovery and rehabilitation process.

Hospital Stay

  My son’s relocation to the ninth floor was uneventful but it didn’t take long for the everyday things we take so much for granted to surface. To scratch an itch is an impossible task, personal hygiene measures of teeth brushing, hair combing, washing the face, all of these are enormous tasks performed daily, but soon become major hurdles in the day to day battle of life for the quadriplegic or the severely injured.

  The realization of not being able to move can quickly turn to panic for the recently injured and something I found to be very easy to remedy. Our visits noted that Jerry and most patients on that floor are left alone for quite some time for whatever reason may be appropriate at that time. I heard many patients "panic," and yell out for someone, any one, but many times their anxious cries were not addressed. Of course, not being privy to each person’s particular demands, specific answers are not possible. My suggestion to the nurse was simply answer on the room speaker acknowledging the patient’s call, responding as soon as time constraints permitted. The change in the patient’s demeanor was instantaneous and the "relaxed" look was quite apparent, particularly to those folks who did not have "daily family members" to assist with the "major" distractions mentioned above.

  The days turned into weeks without major problems to note of. The single thing that seemed to irritate me the most was the "medical staff." That’s the "white coats who walk in a group with notebooks and folders under their arms appearing in a state of continual chat, making their rounds if you will, and always conveniently "missing" several rooms on their visits to see "the patients." I guess temporary blindness or amnesia overcame them for the moment causing them to "miss" patients, particularly those without insurance.

  The one thing that became apparent with attempts to seat him without performing the task slowly, was the sudden drop in blood pressure. On the daily visits to therapy, the hospital transportation crew would take him horizontally to physical therapy (PT) or occupational therapy (OT) whereby the PT would promptly raise him vertically and "out like a light" he would go. It was a war that finally got resolved by the OT who apparently observed what was happening and promptly set the PT straight.

  The big day finally arrived and we were now going to the adjacent rehabilitation hospital for some "intense" therapy. The room he was to occupy for the short period of rehabilitation was very nice. The "controls" to operate the phone, television and other items was what they said was "sip and puff." My son has never had any trouble using his mouth and as such the adaptation time to learn the ropes passed quickly and the improvement was immediate.

  For the first time since the accident, Jerry could now look forward to weekend passes. "Going home" took on a special meaning and he appeared to look forward to his weekend outing.

  The family was also included in his rehabilitation. Our "training" consisted of the proper procedures for patient handling, hygiene, well-being, and consisted of: moving to and from bed; in and out of the wheelchair; the bodily functions; medications; emergency situations like autonomic dysreflexia; vehicle loading and unloading, to mention a few. The patient’s life is altered with the accident, the family’s life is changed as a result of the accident. THE RESULTING QUALITY OF LIFE FOR ALL FAMILY MEMBERS IS RELATIVE TO THE PATIENT’S ACCEPTANCE AND ABILITY TO COPE WITH THE ACCIDENT AFTERMATH.

  The rehabilitation staff was excellent and very caring. The biggest letdown was access to the exercise room. For whatever reason, use of the exercise equipment was very limited if at all; this was very strange indeed and probably was the worst thing I could mention about Jerry’s tenure there.

  The time passed quickly toward Jerry’s release and going home. The social worker was very helpful and provided general information about the care of and programs for quadriplegics. BE SURE YOU KNOW WHAT PROGRAMS ARE AVAILABLE FOR YOUR SEVERELY INJURED LOVED ONE PRIOR TO LEAVING THE FACILITY. THERE ARE PROGRAMS PERTAINING TO HOME HEALTH CARE, PHYSICAL AND HYGIENE EQUIPMENT, TRANSPORTATION AND FINANCIAL ASSISTANCE AVAILABLE. TAKE THE TIME TO GET THE ANSWERS!

  The time to say goodbye finally arrived. Jerry was going home. This was a time of great anxiety for the family. Did we truly know what to do? Could we quickly recognize problems and assess the seriousness of the situation? What was Jerry’ s attitude going to be when he got home? How were the grandchildren going to cope with the situation? His brothers? We obviously were going to find out in short order.

Home and Rehab

  The time at home was very stressful to say the least. We wanted Jerry to be comfortable of course but the "routine" soon became over-powering. Constant attention to all the things we take for granted soon proved to be just too much for several of his brothers, who also had families of their own, and the burden of care quickly fell on his parents, mother during the day and father at night. My son Kevin and his daughters, Stephanie and Michelle, and Troy's son, David, have been invaluable in helping with Jerry's care under some trying times thereby providing some relief for the parents, particularly Jerry's mother.

  It didn’t take long for the TRC (Texas Rehabilitation Commission) to step in and offer help to Jerry for his rehabilitation and general well-being. These folks, particularly Lonnie James, have been a Godsend. I can not say enough about this organization. They provided the physical equipment among many other things for Jerry's rehabilitation. Jerry is blessed with an excellent caseworker, Susan Wells, without whose help and devotion I hate to think where we would be now.

  The constant possibility of dysreflexia rearing its dangerous head if the bodily functions are not taken care of in the time constraints suggested by the hospital was probably the biggest demand on the family’s time. I WOULD SUGGEST A ROOM MONITOR AND A FOLEY CATHETER IF AT ALL POSSIBLE. These items alone are worth their weight in gold. INSIST THAT YOUR LOVED ONE ADAPT A SCHEDULE THAT ALL CAN WORK WITH, NOT JUST THE INJURED PERSON. If you don’t give "tough love", you simply will be overwhelmed trying to provide the care yourself.

  There are several good organizations that can provide assistance to your loved one and ease the burden of care for you. TO MAINTAIN YOUR OWN HEALTH AND WELL-BEING, IT IS ABSOLUTELY ESSENTIAL THAT YOU GET HELP. In Jerry’s case, no insurance was available, so finding help was very hard but organizations to assist you are available. ASK THE SOCIAL WORKER TO ASSIST YOU, BUT BELIEVE ME, FIND SOME HELP!

  The organization that helps with Jerry has provided about four to five hours of daily care for some time now. Of course, without insurance, be patient with the "help", most are nice folks but overworked and underpaid, and sometimes do not show up at the time promised, if at all. The time they are there however, provides for Jerry’s mom a release, a time away, and is wonderful. If help were not available, we would probably have buried her already.

  I guess my biggest disappointment to date pertaining to rehabilitation, was the stay experienced at TIRR in Houston. My son had been told about their program to the point of believing they apparently could walk on water. When the approval came to check him into the program, albeit a short stay of only forty five days, we were elated to say the least. My personal opinion was that the center was much more interested in the money reward than the rehabilitation of its patients, at least it appeared that way to me. Several other folks I know have much the same opinion.

  Probably the rehabilitation center that has the done the most for Jerry so far is the Healthsouth facility in Clear Lake. Several of the folks there appear to be very interested in Jerry's future. On the numerous occasions I have visited the center, the staff is always courteous and helpful; the premises are neat and clean, and the van driver, John Graham, who picks Jerry up for the rehab sessions, is very nice. One particular person stands out and has been very supportive to Jerry, his name is Tom Cowan. I personally have not met this man but Jerry speaks so highly of him, he has to be doing a great job on my son's behalf, and I thank him for his support.

Comments

  At the moment of this writing, the injury to Jerry was a little over four years ago. Jerry’s original prognosis was no movement from the neck down. He has slowly progressed to a point about mid torso, unfortunately still not to the point of being able to handle his bodily functions. I know this is a terrible thing to say, but if he could just progress to the point of a paraplegic, most of his care could be handled on his own and his movement would be less limiting, caused by transfer assistance being necessary at this time.

  Several rehabilitation programs have been tried over the years with some success, but I guess the bottom line is now between the good Lord and Mr. Haney. I truly believe Jerry can do about anything he makes up his mind to do, but he must continually expend the effort necessary to get further, if possible, than he currently is. His mother and I encourage him to work harder but on occasion, complacency sets in and a television program might sometimes take priority over pushing his body with more exercise. A "trip" down the street to visit a friend might take the place of the stand-up or rickshaw workout. I can understand how frustration can set in. Assistance must be provided to do the machine exercises previously mentioned, and someone may not be available at the time to "assist" Jerry when he decides to do them.

  The recent addition of a computer and phone system for Jerry's use has opened up the entire world via the internet. He has shown slight improvement in finger movement due to keyboard usage and receives and sends email everywhere. Live video pictures of his workouts are now available from his expanded website, although the broadcast schedule is not set yet. Audio is being configured and tested at the present, both of which I believe will help Jerry further improve. Just think, if but one person sees the workouts and comes to realize that they too can do it, what a good thing that would be.

  My belief has always been: if you accept parenthood and the responsibilities that come with it, then you must accept the good and bad associated with parenthood and adjust your lifestyle to cope with it. I simply would not be able to live with myself if I had opted to accept the easy way out…relegate my son to a nursing home.

  My greatest fear for Jerry is that he will indeed end up in a nursing home if he does not soon accept the fact his parents are aging, both over sixty one at the present, and the level of his care will drop drastically when we pass away. I can only hope and pray that either a "cure" for the spinal cord injured is found soon or Jerry realizes the above fact and expends ALL efforts to get on with his life and the independence that comes with it.