My story began before my son's birth. As I approached my eleventh week of pregnancy, I was still working full time as a police officer. During a routine disturbance call on the street, I was run down by a drunk driver.
I suffered from multiple injuries, was hospitalized for 75 days and underwent 3 major operations. I was stunned when the doctors informed me I had not lost my baby. Since my unborn child's life was dependent upon my survival, I had to live, so he could come into this world.
At home I had 10 children, the youngest were 18 month old twins. I hadn't told anyone another baby was on the way, this one was conceived in spite of birth control and now he had survived his Mom being hit by a car. I am somewhat superstitious, so I began to think there was a special plan for this child.
On June 17,1985 --six months after my accident-- I gave birth to a healthy 6lb.15oz. baby boy. I named him Jason Matthew. In the book of names, it means ... God's Gift; the Healer.
Shortly after his birth the doctor's told me he had some respiratory distress and had turned "dusky", but not to worry, he was fine. And that he was, fine until he was about 18 months old. First he had several unexplained seizures which the doctors said were related to fever. Then at Christmas 1986, he had his first asthma attack. We were doing home videos at that time and I recently watched the one from that year, I never realized we had caught his first attack on tape as part of the family Christmas tape which ended when I decided to take Jason to the ER.
My accident had left me unable to walk and I eventually was granted duty disability benefits from the Police Department. I also underwent 14 more surgeries during Jason's first 5 years of life. He in turn was hospitalized or seen in the emergency room on a regular basis.
By 1991, his doctors were urging me to move to another place where Jason would not be so sensitive to the climate and pollution. My own doctors stated I would spend the rest of my life in a wheelchair if I too didn't move to a warm, dry climate. At least they agreed to send me and Jason to the same place.
I sold my home, packed up the other 5 under-18 year old children and off we went in search of our new life. First we went to a very small rural town, just a speck on the map, and Jason thrived. He was exposed to everything they said he shouldn't be and in 2 years, he only had to go to the hospital once. Unfortunately, the tiny town school district wouldn't allow Jason to return to school because they had no nurse. We then moved again, same state, bigger city.
Over the next 2 years, Jason was hospitalized eight times with each trip becoming more serious. Still, these were only asthma attacks and with the exception of his pediatrician, most of the ER doctors thought I was either over-reacting or over-protective when I insisted he be admitted to the hospital each time. Unfortunately, I was neither and Jason would appear to recover from the initial attack and then he would crash...several hours after admission. He was repeatedly rushed from the pediatric unit to intensive care...we had reached a point where his doctor had posted an order in the ER saying if Jason came through the door he was to be admitted immediately.
In April of 1995, Jason once again went to the ER, was admitted and transferred to intensive care. This time he became critical and was intubated. I had never been so frightened in my life. After several days in the drug induced coma needed to intubate him, Jason was awake, breathing on his own and playing the hospital's Nintendo. Something was different though, he was very quiet. He sat for hours, holding my hand, cuddling and snuggling with me and clinging like velcro to my side. His doctor noticed and felt he was depressed. We were referred to see a therapist who specialized in children with chronic illness and the emotional impact this has on their lives. The doctor also recommended I take Jason to Denver. They have National Jewish Hospital there and she felt they would be the only place where the right treatment plan could be found for Jason. The doctors here were convinced they were over their heads and the next attack for Jason might be fatal.
National Jewish Hospital in Denver, Colorado specializes in respiratory diseases...to go there you need to be referred by a physician who forwards the necessary background information to them. They in turn accept new patients based of the severity of the problem. Jason met the medical criteria for admission. We were sent the paperwork to complete. He was accepted! The plane tickets were purchased, temporary housing was arranged (the out-patient diagnostic program is 2-4 weeks) suitcases were packed and the calendar was in countdown mode...Jason was to be admitted on July 26,1995. On the day before his admission I received a call from the hospital administration. "Don't come yet, your insurance company has refused coverage. You need to get this straightened out with them and reschedule."
I contacted the insurance company and found out they thought I had another insurance plan I had not told them about. No way they would listen to me, so I put it in writing and sent it off to them. How do you prove you don't have something?????
Untangling red tape is a difficult sometimes impossible task, the days were passing and still no word. Before I had a chance to follow up further, Jason came down with what seemed to be a cold on August 17,1995..........
On the morning of August 17, Jason woke up stuffy and miserable looking like he had a cold...I began the routine precautions of giving him a nebulizer treatment and his array of regular maintenance medication. I added Prednisone, hoping to keep an attack from starting. I had a plan worked out with his doctor where I had the medication at home but if I felt it was necessary to give it to Jason I would notify her office right away. Then she would see him as soon as possible. We were given a 4:00pm appointment. Jason was stable all day. On the way to the doctor's office he was very quiet. When I asked him, "What's wrong?" He said, "I'm just tryin' to breathe." I told the nurse when we got to the office that Jason needed a breathing treatment right away and she took him right into see the doctor. She said, "Yep, he's got a cold." She wrote out several prescriptions, gave him a breathing treatment and suggested we stop by the out patient department of the hospital for a chest x-ray just to be "safe." It was now 5:00pm.
The next three hours are a blur...in that space of time, my son arrived at the x-ray department, was transferred to ER, got more respiratory treatment, was intubated and went into cardiac arrest. My entire world exploded during the 27 minutes it took to resusitate Jason. Too much time...you can't go that long without oxygen to the brain...I knew that...but I hoped, I prayed...The doctor said he had had children who were deprived for longer periods of time that came out alright...we just had to wait it out.....
Jason was on life support and transferred to pediatric intensive care...this was a shock for many of the nurses who knew Jason from his other visits. The little guy who still played Nintendo with a collapsed lung...his deadpan look could stop the nurses in their tracks...especially if they were about to do something to him...this "regular customer" to their unit was in serious trouble. His favorite nurses averted their eyes when they spoke to me...they stood at the foot of his bed...deep sadness etched on their faces...They knew...and so did I...but we all pretended it wasn't true...I taped his picture on the wall and told everybody, "This is the REAL Jason"...the one on the respirator is a temporary illusion...The days went by and he began posturing...another sign...During the early morning hours of August 21st...I requested organ donation papers...I sat on the bed next to Jason and explained what I would do if he didn't wake up...I know it was just reflex...but he squeezed my hand...like saying, "Okay Mom, this is what I want, too"...The nurse was a little flustered about this but I told her the worst thing that could happen would be me getting to rip these to shreds when he wakes up.
A week later, I had fallen into an exhausted dreamless sleep, suddenly I was startled out of bed...I had to go see Jason at the hospital...right now...When I started the car, the radio began to play "Tell Me I Was Dreaming"...and I knew why I was going to the hospital...I raced thru the ER and up to the Peds ICU, as I pushed open the door, Becky, his nurse turned around, her hand covering her mouth as she gasped, "I...was just...going to call you." She recovered somewhat and said, "You're not the first Mother to get here before we called." .....Is..he...Gone??? "I don't know," she replied, "but something has changed, something has happened, we're not sure...we're going to run tests...He's going down for a CAT Scan now. That was the first step in a 12 hour series of tests used to confirm if Brain Death has occurred. I will never forget one second of those hours...at 4:00pm, August 28,1995, the doctors took me into a room and told me, "Jason is brain dead."
They gently asked me if I still wanted him to be an organ donor and if I would allow an autopsy...this was not mandatory but they wanted to know why...I gave my consent to both. I went back to the room and sat with my son. The machines were still breathing for him...the medication kept his heart beating and his blood pressure normal...but he was gone...my little miracle boy was in Heaven only his body was still here.
What we thought was a cold, and for anyone else would have been just a cold, turned out to be RSV. This is a virus that occurs in everybody and is usually seen in the winter. It goes unnoticed by most, chalked up to just another cold...but for some...tiny infants ...the elderly...and asthmatics it can be lethal. In 1995, there was no vaccine, or screen for RSV. It is highly contagious and can remain on surfaces for months. Its existence can not be detected until you are already sick and a specific test is done ... for some it is too late, ........ Jason was one of them.
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