August 18, 1994 to February 18, 1997
Our son John John died of pneumococcal meningitis on Tuesday, Feb.18,1997. He was exactly 2 1/2 years old. It has been a very difficult four months since the love of our lives has gone. By sharing our story may be we can help someone else who has had to face the devastation of the meningitis virus in one of their loved ones.
John had a high fever on Friday, Feb. 14th. We immediately started Tylenol and on the advice of his pediatrician, Motrin also. Within 30 minutes, a once lethargic little boy was beginning to move and become his “old self”. One hour later, I was told by my husband (who was watching him), that John was running around the house and completely fine. We continued the Tylenol and Motrin for the rest of the day and took it easy that night. We watched a video and went to bed fairly early. The next morning John was up at the crack of dawn playing with my husband, with their “pow pows”, and running around the house like a “wildman”. We ate a big breakfast and John John wanted to visit my parents and brothers that day. He still seemed a little warm, but his temp. never went over 100 degrees. I gave him Tylenol in the morning and once again in the afternoon.
At Nana and Papa’s, once again John played really hard and “wrestled” with his uncles. He also ate again at their house, another huge breakfast. John always took a very long nap on the weekends, but only slept approximately 15-20 minutes at my parent’s house. We came home and John played again, the story of most 2 1/2 year old’s lives. John never did take a nap that day which seemed unusual to me, but I knew how excited he was because it was the weekend. At 8:00 that night John John wanted to go to sleep. My husband and I could not believe our ears, our 2 year old son was asking us if he could go to sleep! We of course let him, knowing that he was tired from such a long day without a nap. I checked on him all night for a fever and did give him tylenol during the night. John was very prone to getting fevers, he had been getting low-grade fevers since he was about 6-8 weeks old. Never anything serious, the virus always just ran it’s course.
We woke up on Sunday, Feb.16, about 7:00 and John did his asthma treatment and ate very little. My husband woke up with a case of the flu and John said he didn’t feel good either. Both of them were very tired and slept on and off for the next 2-3 hours. Because my husband had just come down with “something” we thought that this must be the same virus John seemed to have. John woke up again and ate a little, but just seemed so tired. We went through every part of his body asking if something hurt. “Does your head hurt John? Your tummy? Your ears? “etc.etc. He kept saying No and wanted to sleep again. The fever started to spike again around 12:00, I called his doctor who said to start the tylenol and motrin again and try a tepid bath. We did all of that, and it came down. John seemed to wake up a little more and we did another asthma treatment. Once again, within one hour, the fever went up again. My husband put John in the bath, but this time we decided enough was enough….John John was going to the hospital. We dressed John, who was so lethargic by this point. He did walk out of our house on his own though, which still amazes the doctors.
We arrived at a hospital nearby and John was still lethargic, he would only talk or respond if I said “John John” very loud. Immediately after he would look at us, he would close his eyes again. They asked if he could have gotten into any poisons, we knew the answer was no. He had only laid on the couch the entire day and was always in our sight. The decided to do a spinal tap. I really started to panic, when I asked if John had moved during the spinal tap and they said he did not move a muscle. He seemed to be in a coma, I could not believe this was happening to our baby! The doctor asked us to sit down so he could talk to us about John’s condition. He thought John could possibly have meningitis, he was not sure however because John’s spinal fluid was clear, with just a hint of cloud. He told us that usually a patient with meningitis will have yellow spinal fluid. They began immediately to pump John full of the appropriate med’s for meningitis. The doctor let us know over and over that John was there so early into the illness, that his was very treatable. We then took an ambulance to Riley Children’s hospital. We were leaving the first hospital and arriving at Riley within 45-50 minutes of our arrival, with John full of medication to fight this virus.
Once at Riley, the doctors and nurses were pleased that John was still responding to their commands. For example, open your eyes, stick out your tongue, squeeze my hand, etc. I believe it was about 1-2 hours after arriving at Riley that John had a seizure. I couldn’t believe my eyes, 12 hours before my child was a healthy 2 year old and I barely recognized the child on the bed now. I thought it was over, that he was gone. They then did an EEG and Cat-scan that came out perfectly normal, and right afterwards John was squeezing our hands and moving as if he was very uncomfortable. The nurses said that this was a good sign, he was mad because they had put a respirator in his throat and he was showing that he was aware. This was the last time we ever saw him move.
The neurologist became very concerned that John was not responding or moving at all after about 12:00 Monday morning. She would clap her hands or pinch him and he would not move a muscle. I really thought I was going to lose it. To watch a perfectly healthy child die before your eyes was more than I could bare, I began to pace and did not stop for the next 24 hours. I really thought I was in a horrible nightmare and I would wake up soon. I had to wake up! Monday morning, another EEG and cat-scan were done. This did not come out normal though. It showed that John John had a flat line. He was brain dead. The cat-scan showed a very distressed brain. I am glad that I was ignorant at the time, I did not know that a flat line stayed flat. We and all of our friends and family members rallied next to John John’s bed, we talked to him constantly, we sang to him, we prayed, for the next 24 hours until the next scheduled EEG. Of course the next EEG showed the same thing, John was gone. They did tests on John for what seemed like a very long time, and then met with us to tell us that they believe John died sometime on Monday. I couldn’t believe I was walking out of Riley hospital, 48 hours later, without my child.
John was our only child, the center of our universe. I have not stopped reading or talking for four months, it is the only thing that keeps me alive. To lose a child in 24 hours is something none of us could even let ourselves think about for 1 second. We miss John like crazy, our house is unbearably quiet, and we really don’t know what to do with ourselves. One thing that really upset me was to read about the symptoms of meningitis, ex:lethargic, vomitting, headache, stiff neck, seizures, etc.,, and to keep constantly reading about “early medical treatment” will be the saving factor in someone with meningitis. We acted on John only having one symptom, lethargy, and he still died. In fact, the doctors have told us several times that had we taken John in any earlier they would have a) sent us home, where John would have died, or b) the spinal tap would have come out clear and they would not have known what to do with John, because they would not have had a prognosis. Yes, I believe in some cases early medical attention does save lives, but it did not in John John’s case. We do not know why our precious son was not saved and we will never know in this lifetime. I believe we will see our son again and that is what keeps my husband and I going in this life.