JOHNNY'S JOURNEY

Sunday, February 12, 1989. My son was born today, John David Penney. After spending the last month of my pregnancy in hospital, I was anxious to have my baby and to go home to be with his big sister, Krystal, my little girl, who was 3 years and 5 months old. The month I spent in hospital was the first time I had ever been away from her for more than a couple of hours at a time. She was a real trooper and was enjoying staying with her Aunt Margie, while I was in hospital.

She was very excited about becoming a big sister. She had her mind made up that her baby was going to be a girl and she was going to name her Vanessa, like on the Cosby Show. If it was a boy, she had informed me, she was going to send him back. Well, it was a boy and telling Krystal that she had a brother, instead of a sister, was the easy part. Telling her that her new little brother may never get to come home with us was the first time I ever experienced my heart breaking.

The next morning, a nurse wheeled my son into my room in an incubator. He was wrapped in bubbled plastic to protect his body temperature. She said that she was bringing him in to say good-bye to his mommy, before he left for the children’s hospital. She suggested I put my hands inside the small opening of the incubator, so I could touch him. Oh God, I found this so painful.

I remember standing in the hospital window and watching a team of medical Doctors and nurses taking my baby to a waiting ambulance to transport him to the children’s hospital. I just froze at the window and couldn’t even cry. I guess shock does that to a person.

After Johnny's birth, and during a lengthy stay in hospital, Johnny underwent heart surgery to correct a birth defect. Despite the high risk involved, Johnny beat the odds and began his journey!

After two months in hospital, Johnny was ready to come home. Everything still seemed so unreal; the past two months had been so confusing. Why is this child still alive? Why has my son beaten the odds and reached this day; a day that is usually held with so much joy and expectations. Listening to all the doctors talking about what to expect from Johnny, had left me feeling so scared. A picture was painted that I’m not sure I can live; a picture of distress, pain and heartache; a picture of death.

I know the medical team was giving me the only information they had available to give. What they told me was not a lie. They were not trying to hurt or scare me, but rather were just being honest with me.

"He may never smile; he will be severely physically and mentally disabled. He will cry a lot. He will cause a lot of stress within the family unit. You will find yourself fighting all the time for his rights."

As I was leaving the hospital that day, with my little girl on one hand, and our new addition on the other, my stomach was doing summersaults. For the past two months, I have had a team of amazing, caring and loving doctor’s and nurses there at all times to take care of Johnny. Will I be able to take care of him and protect him? I felt so alone, so nervous, so helpless.

As I was about to walk out of the hospital, the doctor, who was the head of the intensive care unit and who had explained Johnny’s disability to me, stopped me and said:
“Colleen, I know these past two months we have spoken to you of nothing but negativity. Let me tell you something, 90% of this child’s progress will depend on how you treat him at home; how this child will be accepted into your family.”

Thank you doctor, you made a difference!

The first three years of Johnny’s life found him battling many respiratory infections. Each episode brought with it the fear of losing him. Heart failure and respiratory infections are the main causes of death in these children.

Each infection would result in Johnny being hospitalized and hooked up to intravenous and air mists. Antibiotics would be started immediately. Even a mild cold was a serious concern. Johnny had three holes in his heart and one was quite large. Any bacteria at all entering them could cause them to become even bigger.

On one occasion, the infection turned to pneumonia. Big scare! Johnny would stop breathing for several seconds at a time. He was a frightening shade of grey. I truly believed that, if he was admitted to hospital at that time, he would never have come back home. A team of about eight doctors and medical staff insisted that Johnny must be admitted or he would die. Johnny's pediatrician, whom I have such respect for and confidence in, to this day, looked at all members of the medical team and said, “if Johnny is going to survive this crisis, he would have to go home with his mother.”

I cannot explain how I knew that he needed to come home; I guess it can be summed up to a mother’s gut feeling. I left the hospital and, for seven days, slept on the floor in Johnny's bedroom monitoring him, making sure his lungs were being cleared regularly and that the hot mist was working around the clock. On the fifth day Johnny was completely recovered and has never had another case of pneumonia. The paint on his bedroom walls began to peel from the hot mist.

Shortly after, a check up with a cardiologist showed that all three holes had closed up in Johnny’s heart and he was no longer considered as having any heart abnormalities. The doctors were amazed. They told me that holes in a heart often close on their own in patients who are otherwise healthy, but that, in children like Johnny, this does not happen.

During the next few years of Johnny's life I began to relax, as I came to the realization that this miraculous little boy had no intentions of going anywhere. From a medical aspect, things settled without any further crises and Johnny was developing into a remarkable little boy. It is impossible to put into words what one little smile, from this angel on earth, could do for a person. Such pureness and wholeness just radiated from him, and continues to do so to this day. All that are fortunate to know him are so amazed with the power that seeps from him. He has the ability to soften the most hardened person.

Johnny accepts all people for what they are and expects nothing, but a smile, in return. The simple things in life brings him the greatest pleasures. He loves to sit in someone's arms watching television, while playing with their fingers. He judges no one and loves all.

"LOVE AND BE LOVED"

As Johnny approached the age of 5, it was a time when most parents would be anxiously preparing to send their little one off to school. A time, when parents stand back and relive the first five years of their child’s life and often have trouble believing their son or daughter has reached this stage of growth so quickly. They ask themselves, “where have the past five years gone?” It seems like just yesterday that baby bottles and diapers consumed their day. Now, out of nowhere, they are not needed quite as much. Their precious baby has developed into an independent little person and is ready to begin their own life.

I never thought Johnny would reach this point. At almost 5 years of age, and weighing only 12 pounds, school didn’t seem, to me, a logical option for Johnny’s future. In all honesty, I kept thinking, “what would they do with him?” In reality, he was, and still is, a baby. He cannot walk, cannot talk, cannot feed himself, cannot use the bathroom and cannot tell me if anything hurts. For the past five years, I have been dedicated and committed to learning how to “read” his every need and couldn’t fathom how a total stranger was going to care for him.

Regardless of the negative aspects, which might prohibit Johnny from partaking in an educational environment, I set up an appointment with our local school board to discuss what options were available for children with Johnny’s disorder. I fully expected them to look at me and say, “take him home, he’s too tiny, or check back in a few years”. To my profound dismay, the lady looked at me and said, “do we have the place for him!....... they are going to love him to pieces”. I was terrified! She asked to hold him, but I refused.

Suddenly horror stories began flashing through my mind. Images of Johnny, while at school, fretting for me, as different assistants take care of him all the time. Images of him not being held and rocked, as often as he was accustomed to. This child was also accustomed to being “top priority”, at all times, and always received my undivided attention; almost like a growth on my side or a “part” of my own being. The thought of separation was unthinkable.

I agreed, however, to visit this school. The class was called The Developmental Unit at St. Matthew’s School. The “mother” in me leaped forward and, very forcefully, I was prepared to do battle. Determination filled me with the thought, “no way were any of these people getting their hands on my Johnny”. It just wasn’t going to happen.

I was not prepared for what I encountered, as I entered this classroom. Roughly, eleven or twelve severely physically and mentally disabled children were present. A very soft spoken lady introduced herself as “Ms. Pat”, the classroom teacher, and welcomed us. Although I’ve never shared this with Ms. Pat, something I saw that day in her eyes, a gentleness and understanding, enabled me to immediately pass Johnny to her, knowing he would be safe. It was very obvious these children were all very happy to be there. Their faces, all aglow with happiness and contentment, left me speechless. It’s not very often that this happens.

Suddenly, the classroom was overflowing with students rushing to all the handicapped children, in an attempt to be the first to reach them; to play with them. I looked at the teacher, while wondering what was going on. She explained that these students belonged to The Friendship Club, which consisted of children from grades 5 and 6 who voluntarily use their recess and lunch periods, every day, to come and spend time with their very special friends. They take them for walks in their wheelchairs, sit and read stories to them, or simply just sit and hold their hands. Some would feed the children their recess treats.

It was magical and I knew at that moment, Johnny was going to be happy. The teacher also told me the same staff worked with the children each day. I did not have to worry about unfamiliar faces taking care of Johnny.

The most important and crucial factor, to me, was that Johnny would be in a class where he would be given constant attention and an opportunity to participate in an amazing integration program, which was designed for the utmost benefit of all the children of the school. I felt Johnny’s first priority would be his medical requirements, leaving integration as second and, thankfully, he received both necessities in this order.

Johnny has been in this class now for 8 years and has, during this time, had the same teacher and program assistants; a crucial necessity.

Johnny adapted to school life without any problems. Each morning, he looks forward to boarding the yellow school bus and his eyes dance with excitement, when he sees it arrive outside the window. A program assistant, from his class, arrives daily with the driver. As they leave the bus to come pick him up, Johnny starts kicking his legs and bouncing back and forth in his wheelchair. I realized a long time ago that the memory of this will be stored inside of me forever.

Johnny’s enrollment into an educational program had given me back some of the freedom that I, even without recognizing, was missing and in desperate need of.

The next several years were very hectic. After deciding to return to school, I enrolled in a hospitality and business administration program and worked very hard to prove, mostly to myself, that I could be a single mother and take care of my two children.

The future was starting to look more promising and my expectations were high, when it came to my career. I have always been a people person and, after previously working in the customer service industry for twenty years, the prospect of returning to the workforce was thrilling.

One day, I clearly remember Johnny returning home from school and, as he was getting off the bus, I noticed his body was twitching and trembling. I took him inside, thinking he was a little chilled, as it was during the winter and very cold outside. He continued to twitch and tremble for about twenty minutes, so I brought him to the doctor. By the time I arrived, however, Johnny appeared fine and, after consultation with the doctor, we returned home.

As my college program was coming to end and I was becoming increasingly more excited about getting a job, Johnny’s health declined. One day, I was getting him ready for a birthday party and, while he was sitting in a friend’s arms, I noticed his eyes were rolling back in his head and he appeared lifeless. I had never witnessed a seizure before but, for some reason, I looked at my friend and said, “I think Johnny is having a seizure”. Suddenly, the fear and terror I experienced during the first year of Johnny’s life, rushed back to me. Because he had been doing so well for the past 8-10 years, I had become more relaxed and didn’t worry as much about him all the time.

Johnny’s seizures continued to increase in number and, just when I thought I had witnessed all forms of seizures, Johnny would prove me wrong. He was constantly having severe grand mal seizures and they were terrifying.

In the beginning, I was not in favor of using medication to treat Johnny. He was having seizures throughout his entire brain and chances were slim that any control over these attacks would be possible. There was a part of me that felt, if Johnny were to survive these seizures, his body would have to adjust to the major change that was occurring within him. I was afraid that medication would do more harm than good.

He is such a tiny boy and I was scared that his little body would reject the medication. While considering the possible side affects, and my experience with Johnny’s medical history, I knew that if there was a chance something was going to go wrong, it would happen to Johnny. I have heard so many stories about children like Johnny who basically turned into zombies, while on seizure medication. I did not want this kind of life for him. After several narrow escapes, however, I decided to put Johnny on medication. I knew I would never be able to accept it, if Johnny died as the result of a seizure and I had not tried every avenue available, in order to protect him.

Johnny’s neurologist prescribed a medication and, for the next eight months, I watched my happy, pleasant little boy drift away. Even with his severe physical and mental disability, Johnny had always had a smile. His trademark ~ a smile that could melt an iceberg.

Johnny did not respond very well to the seizure medication at all. He became lifeless; just existed. He stopped smiling, stopped eating and slept continuously, while the occurrences of severe seizures persisted and actually increased during the medication. Previously, he experienced approximately 10 per day, but while on medication, it climbed to 30 or 40.

After eight months, I decided to wean Johnny off the medication. His neurologist, a wonderful and empathic doctor, supported whatever decisions I made for Johnny. He has always made me feel I was doing right by Johnny. He encouraged me, as Johnny’s mother, to make whatever decision that my gut instinct would tell me.

After Johnny was off the medication, he quickly regained his remarkable personality and composure. His eyes sparkled again and his magical smile was back. Also, for some unexplained reason, Johnny’s seizures settled down. The episodes had decreased so dramatically, I found myself forgetting that he ever suffered from this condition. For now, things had settled once again.

Johnny turned the charm on this day and everyone received a huge smile that, I am sure, will stay with them forever. He has so many amazing friends that I would not be able to rent a room big enough to hold all of them. This is all because of the wonderful school he attends and its development of the most amazing level of integration one will ever see.

His Aunt Diane gave him his huge cake and, because his friends presented him with so many gifts, we ran out of time and couldn’t open all the little treasures he received that day.

It was a wonderful day and will live inside of me and many others forever.

Thank you to all our family and friends for giving Johnny this special day!

(SEE JOHNNY'S "BIRTHDAY BASH" PAGE FOR MORE!)

Johnny’s seizures settled again without the development of any major crisis. He continued to attend school; an experience he thoroughly enjoys. Everyone loves him so much and can often, very easily, become mesmerized by his beauty and envious of his unconditional love and purity.

Since the seizure scare, I am once again constantly alert and always waiting for the next challenge. Johnny was born with a slight curve in his spine; however, as he became older, this curve progressed to a more serious degree.

Upon consultation with an orthopedic surgeon, I was informed that Johnny’s curve would eventually cause major problems for him. It was also explained that the curvature would increase to a degree that would result in the onset of his internal organs suffocating, causing him to die.

I had to make a decision regarding major surgery. “Was I going to permit Johnny to have major back surgery to try and correct this condition?” As with any surgery, risks have to be considered, but the risks are much greater for someone with multiple challenges. No guarantee was given that any significant amount of correction would result from the surgery. Basically, he would have to be opened up and exploratory surgery performed, before the doctors would have any idea of what they would be able to do for him.

I remember when Johnny was born and being told by the doctors that I would be faced with having to make decisions, such as this one, for Johnny. Doctors realistically pointed out to me that any decision made for Johnny, would have to be made with consideration given to if whether or not his quality of life would improve or if his death would be extended, but with more pain and suffering to endure.

After Johnny had all blood tests and body gases checked, the doctor called me to discuss the results. He explained that Johnny’s gases were very low and, if surgery was to be an option, it would have to be done immediately. I was told that Johnny would not survive much longer without surgery.

“What do I do?” The surgery was major; major surgery with exceptionally high risk factors. The probability that Johnny would not even make it through the procedure was very real and, if he did, the recovery would be very long and painful, with the possibility existing that no correction could have been made.

I was faced with the dilemma of deciding for or against the surgery and, if Johnny died as the result of either decision, I knew I would hold myself responsible. I prayed a lot.

I made a promise, when Johnny was born, to always do whatever was possible to provide him with a loving and comfortable life. I could not handle the thought of suffocation from within. I decided to go ahead with the surgery, although with many reservations.

We arrived at the hospital around 8 a.m., the morning before the surgery. There were many tests to be done and the entire day was spent going from one to another. Fear and panic began to increase within me. Let’s call it “a mother’s gut feeling” again, but this time the feeling was telling me that this just did not seem right.

Johnny is such a tiny boy and, at 14 years old, he weighs only 33 pounds. All day I kept praying to God to give me a sign, if this was not the right time for Johnny to have this surgery.

The anesthesiologist came several times that day to talk and kept asking if I realized what a major surgery this would be for such a tiny boy. She is such a wonderful person and had previously put Johnny to sleep for other surgical procedures, but she had concerns about Johnny going through this operation.

As we were talking, a nurse was nearby doing some tests on Johnny. She put a little connection on his toe and read something. I really wasn’t paying much attention, because I was listening to the doctor.

Finally, about 4:30 p.m., Johnny and I were in his room. All pre-operation tests had been completed. I was sitting on the bed, looking at Johnny lying in the crib, and something came over me.

The main basis for surgery at this time was because Johnny’s gases were so low and, if they became any lower, surgery would not be an option. If Johnny’s gases were not being affected by the scoliosis, the original plan had been that he would be left alone and checked every six months. If his gases were fine, then his internal organs were not being squashed.

At that moment, a personal friend walked into the room and I remember looking at him and saying “I’m taking Johnny home!” I called a nurse into the room and asked her to check and see what the other nurse had been checking, while I was talking to the doctor earlier that morning. She returned and told me the other nurse had been checking Johnny’s gases and the test showed they were excellent. Another specialist, from that department, was then called to check Johnny’s gas reading and I was told that not only were the results great, but they were probably better than any of ours.

Even though the surgeon had left for the day, I insisted he be called and informed that I had changed my mind regarding the surgery. In no time at all, he returned to the hospital and met with me to discuss my decision. Upon confirmation that Johnny’s gases were excellent and he was in no immediate danger, everyone agreed “why put him through such a life threatening procedure, if it was not necessary”.

It was close to Christmas and I said, “We have been given a Christmas Miracle”.

It has been three and a half years since this incident and Johnny’s scoliosis still hasn’t caused any problems for him. I know this can change at any time, but until there’s a real reason to put Johnny through such painful surgery, I will not permit it.

It took quite a while for me to settle, after the scoliosis scare. Everyday, when I put Johnny in the bath, I examine his spine and wonder if it’s getting worse. Fear still remains in the back of my mind causing me to question my decision, to cancel the surgery, and leaving me wondering if I have done right by my little boy.

However, my attention turned from scoliosis to another crisis. One day, Johnny spit up after each feeding. At first it was just a little, but I was confused, because this was not a normal thing for Johnny. It continued day after day and the amount of spitting up increased, until it seemed he was losing everything he ate. I remember one day he saturated five towels and I felt he had lost weight. At thirteen, and only 36 pounds, he could not afford any weight loss. It was time to get this checked out.

Johnny’s pediatrician put him on an acid reflux medication. The medication did nothing and Johnny continued to lose all his feedings. He could not even retain a spoonful of water and aspiration was a major concern. Johnny would be constantly throwing up, even in his sleep. He was turned over to a gastrointestinal specialist who tried several other medications, but to no avail.

This continued for six months and Johnny lost one sixth of his body weight. There was a possibility that he could literally starve to death. The risk of aspiration was increasing more and more. He would sleep in the curve of my body every night and I would keep my hand over his heart, so I could feel it beating throughout the night.

Finally Johnny was turned over to a surgeon who felt that surgery would have to be performed or Johnny would die from aspiration or starvation. He performed a nissen fundoplication on Johnny, which involved taking the muscle in his stomach and tying it around his asphosicts to prevent him from being able to throw up. At this time he also inserted a feeding tube in Johnny’s tummy.
A pro-active step.

He explained that, in healthy people with this problem, once surgery has been done the problem is fixed for life but, with people with neurological problems, the reflux would, more than likely, be back within two years. Then Johnny would not be able to eat orally any more and he would have to be tube fed, because he would be in a constant risk of aspirating.

Johnny, being the little fighter he is, came through the surgery with no problems. He was in hospital for 8 days and I slept next to him every minute. As usual, he won the hearts of everyone who met him. All the nurses were so impressed by how pleasant and happy my little boy is and amazed by his tolerance for pain. They were all so wonderful and very patient with Johnny’s mom, who can be a handful when it comes to her children.

Johnny had been battling an ear infection for about a year. It seemed that each time I turned around, he was on antibiotics for his ear. It would become very infected and cause him unbearable pain. I was taking him back and forth to a specialist for about eight months, before he could even see inside his ear good enough to examine what the problem was. He said the condition of Johnny’s ear was so bad that the infection was preventing him from being able to see the problem. Johnny had a huge hole in his eardrum and surgery would be required to correct it. The bone in his ear had to be drilled away to make the opening larger and a piece of muscle inside his ear would be used to cover over the hole. This could be done in a day surgery procedure.

After the recovery period, Johnny was ready to come home the same day. Upon leaving the hospital, I looked down and noticed that the bandage covering Johnny’s ear was thoroughly soaked with blood. Before we had a chance to leave the hospital, I had to rush him to the emergency room.

By this time we had been at the hospital for about 12 hours and all I wanted to do was get Johnny home, so he could lay in his own bed and recuperate. We were both so tired. The Doctor in the E.R. had to call the ENT Specialist, who was on call, so I could speak with him and gain reassurance that there was no need to worry and that, sometimes after this surgery, there can be bleeding. It didn’t seem right to me because there was a lot of bleeding.

So, I took Johnny home and, that weekend, had to take him back to the hospital two more times, because of bleeding. Thankfully it finally stopped and, since then, his ear problems have been corrected and no further problems have occurred.

Johnny’s seizures began increasing again and I was still hesitant about using medications, until one night Johnny took a cluster of 50 seizures in a three hour span.

I called the hospital and was relieved to speak with Johnny’s neurologist, who was on call that evening. He guided me in my first attempt to administer an emergency medication, which I had on hand for this kind of situation. I was so nervous. A little boy in our neighbourhood, at the time, had just died from taking a seizure and, while I was so sad for his family, I was very scared that this would happen to Johnny. I knew that I had to put him on regular medication. The possibility of him dying, while having a cluster of seizures, was very real.

I took him to the neurologist and received confirmation that Johnny could die from these seizures. He prescribed a medication for him, which he has been taking ever since. As Johnny’s body adjusts to the dosage, it has to be increased because his body develops an intolerance for it.

This past year, Johnny has been doing remarkably well, with the exception of having to deal with another episode of seizures.

During one crisis, Johnny experienced an uncontrollable cluster of seizures, which lasted continuously for eight hours. For the first time, I had to call an ambulance to escort him to the hospital. We spent two days there and Johnny was administered two alternative seizure medications, in addition to the one previously prescribed to him.

One of the newly prescribed medications could only be administered for a two week period, because of its strength. The other he would remain on, in order to combat his seizures. After about six weeks, however, Johnny experienced a severe allergic reaction to the new medication and could no longer take it. He is presently being treated with the original medication, prescribed before this crisis, and his seizures have, once again, settled for now.

Last year, because of his scoliosis, Johnny was examined by a new orthopedic specialist. The doctor concluded that I was right in deciding against scoliosis surgery, which was suggested several years ago, as Johnny's spine has not changed one degree since that time. I was thrilled to learn this, since I've often wondered if my decision, at that time, had been the right one.

Sixteen!

Not bad for a little boy doctors claimed would only live two weeks tops!

I've come to learn that none of us have any control over how long anyone will remain in our lives, however, we have complete control over how much we can love a person.

Each day, my love will continue to grow for Johnny and that love will see us both through whatever challenges we may encounter.