Our son, Tyler Green, was born on 11/27/96. He was our first and only child at the time. He was about 4 1/2 months old when he caught a cold that he could not seem to get rid of. It was the usual sinus cold, i.e. runny nose, whiney, cough, and irritability that all kids in day care constantly catch. Tyler had been sick with this for about a week and a half. We had been to the pediatricians' office several times during this period because he was not getting any better. They would never prescribe him any medicine. They would give him a check up and tell us to give him over the counter medicine and to make sure that he got plenty of liquids. Then, they would send us home. (They never once did blood work!) By the time we made our third visit, April 23, 1997, Tyler had stopped eating and the doctor said that the infection had now moved into his ears. So, the doctor finally prescribed an antibiotic. He said that he should start showing signs of improvement within 24 hours. My wife, Tara, and I were rotating days to stay home with our son since both of us worked.
Here is a brief journal detailing what happened next.
April 25, 1997 (Fri.)
I woke up about 5:00 A.M. and started getting ready for work. I went into Tyler's room to check on him. Tara, my wife, had sat up all night with him holding him in the rocker. What I saw scared me to death. Tyler looked as pale as a ghost and I literally had to bend down and put my head against his chest to see if he was breathing and still alive. Tara said that he had finally taken a little of his bottle during the night. That was a good sign we thought, maybe the antibiotic was working. I went on to work. At about 8:00 A.M. the doctor called me at my office to check on Tyler. I described to him how pale Tyler was and that I did not think he was getting any better. He told me that he should have started showing signs of improvement by now. He said that if he was not in a playful mood by 12:00, to make an appointment and bring him back in for another check-up. At about 9:00 Tara called me crying saying that Tyler had vomited and that his eyes had rolled back in his head for a few moments. I told her I was on my way home that we were going to see the doctor, and to be ready when I got there. (My office was about an hours drive from our house.)
When I arrived home Tara was holding Tyler and crying. She said that he had started trying to vomit again but since he had no food on his stomach, he was just dry heaving. She said that his eyes had rolled back in his head again and they had stayed longer this time. We jumped in the car and headed to the doctor's office. On the way, I called the doctor's office and told them we were on our way. When we got to the doctor's office, we had to wait for only a few minutes before they called us back to an examining room. Once we entered the room, Tyler started dry heaving and we told the nurse to get a bedpan in case he vomited anything. One of the doctors just happened to walk by our examining room and heard all the commotion. He came in and started examining Tyler and seemed to ask a lot of questions. (The pediatrician's office we use has about five pediatricians in that group. It just so happened that our doctor had taken half the day off and we had to see a different doctor.) The doctor asked us how long his face had been twitching and we answered that it had just started. Tyler's hands and feet started curling up into fists. The doctor tried to straighten out his fingers but they immediately curled back up. The doctor said that he was just having a seizure, probably due to his fever spiking, not to worry. He said it would only last a minute or so. We stressed that he was not running a temperature. He still thought it was fever related. By this point Tara and I were crying and holding each other while praying for Tyler. You could really see the concern on the doctor and the nurses' faces. The seizure would not stop, his pupils would not respond to light, his face was twitching, and his hands were clutched in tight fists. When Tyler's foot was pricked with a pen, he made no response (about 10 minutes had passed at this time or so it seemed). Dr. Money, which was the pediatrician's name, picked Tyler up and said that he was carrying him into their trauma room. Once there, he started applying oxygen to him. The seizure still would not stop and seemed to be getting worse. By this time about 20 minutes had elapsed since the seizure first started. Every nurse and doctor in that building was crammed into this one small room. You could see the sincere concern on their faces. After about 30 minutes Dr. Money asked a nurse to contact Children's Hospital and get the "Lifesaver Helicopter" on its way, NOW! The nurse came back in and said that the helicopter was already out and that they were sending an ambulance. He told the nurse to stay on the phone with the ambulance and keep him notified where they were. (The doctor's office was about 15 - 20 minutes from Children's Hospital.) For the next few minutes, all that could be heard in that room was Tara and myself crying and the nurse down the hall telling us the location of the ambulance.
Finally the ambulance arrived and we were off to the hospital. The ambulance would only allow one of us to ride with them, so I drove our car and Tara rode in the ambulance with Dr. Money. When we arrived at Children's Hospital in Birmingham, Alabama, it was like a scene from the television show ER. About 10 people, doctors and nurses, were waiting outside by the entrance to the emergency room. Once the ambulance stopped, they quickly started working on Tyler. Almost an hour had passed (or so it seemed, everything that day seemed like it was in slow motion) and Tyler was still seizing. I will never forget Tara turning to Dr. Money and asking him if her baby was going to be O.K. His response I can still remember as if it were yesterday, he said, "I don't know, he's in GOD's hands, do you mind if we say a prayer?" So right there, in the emergency room while the emergency team was working on Tyler, Dr. Money said a prayer for Tyler. No one will ever know how much that meant to Tara and myself knowing that he cared that much for our son to pray for him. After the prayer, a nurse walked over to us and said that we could not be in the room while they were working on Tyler. As we exited the room, I stopped and looked back at my son. The last thing I saw was a doctor tilting my son's head back and inserting a tube down his throat. They were hooking him up to a ventilator. From there, we were escorted into a small private room and a chaplain was brought in to comfort us and talk to us about what might happen. We immediately started calling friends and family telling them what was going on and asking them to pray for Tyler.
The doctors came in to talk to us and told us that for the moment they had stopped the seizure by heavily sedating him with Phenobarbital, but that Tyler's brain was still sending the impulses for the seizure. They said that they had to find out what was causing the seizure. The doctor said that they had started him on antibiotics and that until the tests came back they were treating this as if it were meningitis. The sound of this terrified us. All that we had ever heard about meningitis was bad and it always seemed to end in death. They told us it would be about 12 to 24 hours before they could have a positive identification if it was meningitis. (They had done a spinal tap when he was brought into the emergency room.) They told us that they had compared it with past positive tests and it did look like he had meningitis. They told us if it were meningitis, that there were two kinds, viral and bacterial. They said of the two types, we should hope for viral because it does not do as much damage to the brain.
After a few hours, the doctors came to the room where we were waiting and told us it was definitely bacterial spinal meningitis. They told us that it was very bad and that the MRI revealed he had severe swelling around his brain. This was what was causing the seizure. His brain was still sending the seizure impulses; therefore they had to keep him heavily sedated. They told us that there were different strains of bacterial meningitis and hopefully he did not have the pneumalcochal strepptocal meningitis. They told us that this type was very aggressive and attacked the brain. We started praying that it would not be this type.
Several more grueling hours passed, and then finally the doctors came back to our waiting room and asked us to sit down. One of the doctors told us that he had some very bad news. (At that moment I thought that Tyler had died.) He said that our son had the pneumalcochal strepptocal meningitis, but that this was not the worst part. Due to doctors in the past prescribing so many antibiotics, many bacteria have adapted and became resistant to antibiotics. Unfortunately, Tyler had such a bacteria. They said that they had never seen a strain like this one and that at this point they did not know how to treat him. They told us that it was resistant to the antibiotic that they would normally treat this with. He told us that they were going to start giving him several of the strongest antibiotics that they had at Children's Hospital. He said that maybe one of them or a combination of them would work. (I can't remember the names of the antibiotics, but some that I do remember are Vancamycin and Rifampin.) He said that all we could do was wait and pray. I asked him if he was going to live. His reply was that he did not know, the next 36 hours were going to be critical. Due to the severity, he said that he had a very small window of surviving and that if he did survive, he had less than a 1% chance of a full recovery. Some of the side effects he told us we would encounter if Tyler survived would be hearing loss almost certain, brain damage, paralysis, and cerebral palsy.
At this point, we were in shock. Our beautiful baby boy, he was so weak, how could he ever survive this? I remember sitting down, closing my eyes, opening my heart and asking GOD for a miracle. I thanked GOD for the gift HE gave us, our son. I thanked HIM for the precious time that HE allowed us to spend with him. I told HIM that I knew that HE had a plan for everything and that if it was time for Tyler to go to Heaven to be with HIM that I could accept it. I knew that he would be in a better place and safe from all this corruption in the world. I asked that GOD would take Tyler in HIS hands and protect him from any more pain and suffering. (I visualized these magnificent mighty hands holding Tyler and protecting him from harm.) I told GOD that we would take Tyler any way that HE would give him to us, healthy or disabled.
Many of our friends and family had begun to arrive at the hospital to comfort us and show their support. At about 6:00 P.M. they finally allowed Tara and myself to go into the PICU, Pediatric Intensive Care Unit, and see Tyler. You can't begin to imagine how bad he looked. Our beautiful, innocent baby boy, how could this be happening to him? He had wires and tubes coming out of him all over his body. He was hooked up to all kinds of machines. He was on a ventilator therefore a tube was in his mouth and his face was covered with tape. His face looked bruised and swollen and his skin was very pale. He was sedated so he did not move. He looked lifeless!
April 26, 1997 (Sat.)
It was another long day. We did not get but about two hours sleep the night before. We are not in a room so we had to sleep in the floor in the PICU waiting room. All we can do is think about our beautiful son and pray for his healing. How did this happen?
On Saturday afternoon, Tyler performed his first miracle. He woke up! Not only did he wake up but also he grabbed for the ventilator in his mouth. This amazed the doctors. They said that they had given him enough Phenobarbital to knock me, a grown adult, out cold for two days. Also, by him moving and grabbing at the ventilator, we knew he was not paralyzed and his brain was functioning. He was taken of the ventilator late Saturday evening. (Another Miracle!) The doctor's told us he was still on the bubble for survival.
April 27, 1997 (Sun.)
Tyler turned 5 months old today. Tara got to hold Tyler and give him a bottle. He seemed to recognize us. All the nurses were amazed. It made me want to cry every time I saw him. He looked so pitiful.
April 28, 1997 (Mon.)
No change, still in PICU. Friends, family, co-workers, churches, and complete strangers are praying for Tyler.
April 29, 1997 (Tue.)
The boy in the cubicle next to Tyler in the PICU died today. He was waiting on a heart transplant. I am so thankful for every day that we have with Tyler. I pray that God will continue to give us another day with Tyler; we don't care about any possible side effects.
April 30, 1997 (Wed.)
The doctor's are amazed with Tyler's strong will to survive. He seems to be improving steadily. We got to move into a room. Goodbye PICU! We had been sleeping on the floor in the PICU waiting room ever since Tyler had been admitted. The doctors decided to start cutting back on the Phenobarbital, and continue giving him a combination of the three strong antibiotics. Things are looking positive. The doctors finally said that he was going to live but that he would probably suffer the rest of his life from the negative side effects. They told us that not only was the meningitis possibly damaging him, but also they said the high dosage of Phenobarbital could also leave lasting side effects. We did not care; our son was going to live.
Tyler was alert and playful. He does not like the IV so they had to strap his arms and legs down to the bed. They had to do another spinal tap. It was the most painful thing I have ever seen. They just turned him on his back and stuck the huge needled in his back. He screamed so loud that I think you could hear him in all 50 states. The spinal tap seemed to suck the life out of him. He turned pale afterwards and became real groggy and lethargic. That evening, all our family was in the room visiting and someone noticed his eyes had rolled back in his head and his face started twitching again. It was all starting over again. Immediately the room was filled with doctors and nurses. Tyler was seizing again. He was rushed back down to PICU again. Tyler had taken a turn for the worse. The MRI revealed the swelling on his brain was still the same as it had been the first day. When they started lowering the amount of Phenobarbital he was getting, he crossed the fine line that was controlling the seizures and he started seizing again. It is like a nightmare that will never end.
April 31, 1997 (Thur.)
Still in PICU. The drugs are collapsing his veins. About every four hours his IV infuses and they have to restick him. He has been stuck from the top of his head to the bottom of his feet. He looks so sad. When they come in to move his IV, he knows what is about to happen. He looks at me with those big brown eyes and holds my finger. Then when they stick him, tears fill his eyes and he starts crying. He never takes his eyes off of me. It's almost like he is looking at me and saying "Why daddy? Why are you letting them do this to me?" I feel so helpless. As a father, I feel like I should be protecting him from pain. All I can do is just watch. They decided to try an experimental seizure medication on Tyler. We agreed. They are going to start lowering the amount of Phenobarbital and start increasing the amount of this new drug. They are hoping they will be able to wean him off of the Phenobarbital without the seizures reoccurring.
May 1, 1997 (Fri.)
Still in PICU. Tyler seems to be stable. The seizures have stopped due to the medication. Tyler has become a celebrity in a way. We are having people visit us or call us and tell us that they heard about Tyler's illness from friends, churches, co-workers, local radio, and the Internet. They call or visit and it means so much to us to know that people, even total strangers, care about Tyler and are praying for him.
May 2, 1997 (Sat.)
We are all exhausted. Tyler has not had another seizure. The doctors told us that he might have seizures the rest of his life. We had to watch a videotape about how to raise a child who has seizures.
May 3, 1997 (Sun.)
We got to move into a room today. Tyler is improving steadily. The MRI revealed the swelling on his brain is going down. His color is back, he is eating, and he seems playful. We are so full of excitement. For once, we are certain that Tyler is going to live. We don't care about anything else, we know he his going to live. Thank you God!
May 4, 1997 (Mon.)
Tyler seems to be getting stronger. He is still strapped down to the bed because he tries to pull out the IV's. He does not like this at all. It's good to see him fuss. We know he is improving.
May 5, 1997 (Tue.)
The doctors say that they are amazed at his recovery. His movement and actions appear normal. Due to his age, it is hard to make a determination if his hearing has been affected. He is doing so well. We want to go home!
May 6, 1997 (Wed.)
Tyler seems to be doing great. They can't find a vein for the IV. Several IV specialists have tried but had no success. Due to the strong drugs that they are giving him, the IV in his vein keeps infusing.
The doctor finally decided that we could go home since Tyler had finished all his rounds of antibiotic treatments today. We are so excited about going home. They are going to continue the seizure medication and slowly wean him from it over the next couple of weeks.
Doctors and nurses, some who were associated with Tyler's case and many, who were not, keep coming by to see Tyler and touch him. They have nicknamed him the "Miracle Baby". A local television station here in Birmingham has contacted us about using Tyler and his story in one of their news segments. They want to do a story on how doctors have misused antibiotics in the past and how many bacteria have become immune to them.
Update - 2/4/04
Tyler is now 7 years old and living a normal life. He now has a 4-year-old sister. He's a great big brother. I don't think we will ever forget what happened. Tara and I still have nightmares about it. He has passed all his hearing tests and he does not show any negative side effects that we can tell at this time. He is dong great in school. He has made all A's so far in school and he was student of the month last month. He has excelled in sports. He made the "All Stars" team last year in T-ball and he was one of the top players on his football team this year. He seems to be very strong willed and active, but we are not sure if that is just because of his age or from the meningitis. The doctors tell us not to complain, it was his strong will that helped him win his fight with meningitis. The doctors also say that he is progressing normally in all his motor skills and speech. What a Miracle!
We wanted to put Tyler's story in writing for all to read and to give encouragement to those who are going through troubled times in their lives. No matter how dark things seem, there is always hope. Never forget that God is in control and trust that HE knows all. In all that we went through, we never once questioned that GOD was in control. Just go to GOD in prayer and ask HIM for help, healing, or whatever the need may be. HE will listen! Most of all, GOD is still in the miracle business!
A friend from our church wrote down the words to a song and gave them to my wife while we were in the hospital for inspiration. Some of the words to the song are as follows:
"GOD will make a way, when there seems to be no way, HE works in ways we can not see, HE will make a way for me! HE will be my guide, hold me closely to HIS side, with love and strength for each new day, HE will make a way, HE will make a way!"
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