I too have lost a son to pneumococcal meningitis. I read several of the memorials and the stories all sounded too familiar. I'd like to share my story with you in hopes that you will know you're not alone.
Our son Jonathan died on Sunday, August 30, 1998. He was just 20 months old, the center of our world. He was our only child. Everything we did was for him, right down to buying our house. We chose a home in the country with a big yard and fields with horses, cows, and ducks, and in the best school district for when Jonathan was older. Little did we know that in just 48 hours our whole life would change forever.
From the time Jonathan was 3 months old, he stayed with his Grandmother. Nan Naw worked nights and kept Jonathan during the day. She wouldn't have it any other way. She never was around her other grandchild much due to her living far away, so she was determined to spend a lot of time with Jonathan.
About a month before Jonathan got sick, Nan Naw's work hours changed and she was forced to work second shift. Jonathan was going to start daycare. I worried and worried over this. My husband and I both work not out of desire but out of necessity. Everything seemed to be going great, however. Jonathan loved daycare. He called it going to "play". He would even get upset when we didn't let him go when he was beginning to get sick. About three weeks before Jonathan died; he began having a runny nose. The same thing most kids have in daycare. He never felt bad though. About a week before he died, he started having problems with his nose getting stuffy at night making it difficult for him to sleep because he was used to breathing through his nose. I decided to take him to the pediatrician Monday, August 24. At the doctor's office, Jonathan felt fine. He was saying "nurse" and even said "thank you" when the doctor gave him some candy after the exam. The doctor said Jonathan just had allergies and gave him some antihistamine to take once a day to see if it would clear up the runny nose.
Tuesday, August 28 Jonathan didn't act like he felt good, but still didn't have an elevated temperature. He wanted to be rocked a lot. He seemed very drowsy. I thought it was due to the antihistamine which listed drowsiness and somnolence as common side effects. I even asked the doctor who said yes it would cause drowsiness. He instructed us to give the medicine at bedtime, which we did. Looking back now, I think this is when Jonathan first began having symptoms of the meningitis. I blame myself for not recognizing this, you see I am a Registered Nurse, but I just didn't see the symptoms.
Wednesday, August 26, Jonathan began running a low grade temp and saying his throat hurt. We were alternating over the counter pain relievers as his doctor instructed and took him back in to see the doctor this day. The doctor said that Jonathan had a bad throat infection probably from the sinus drainage and prescribed him antibiotics. Jonathan was still playing at this point and eating well. Nothing unusual.
Thursday, August 27, Jonathan was still running a temperature and we could tell he felt worse. He had only taken a 20 minute nap that day. He did eat some, but mostly just wanted to lie and watch videos. We called the doctor, who said he's only had 2 doses of antibiotics so far and that the temp would continue for a day or two until the antibiotics started to work. He said to bring him in the morning if he didn't feel any better and to continue to alternate over the counter pain relievers. That evening Jonathan wanted to go outside. We tried to talk him out of it since he was sick, but he insisted, so Daddy took him out. After about 15 minutes, Jonathan asked to go "in". This is when Jonathan vomited a small amount. After coming in, Jonathan vomited again what he had eaten earlier. He seemed to feel better then. I slept with Jonathan that night. We made us a bed in the floor in the living room so he could watch videos. He vomited a small amount one more time that night and dry heaved a few times. At about 4 am, Jonathan drank 2 glasses of juice and acted like he felt better. I gave him more over the counter pain reliever and he rested well from then until the morning.
My husband got up Friday morning a 7am to go to work. I was planning to take Jonathan back to the doctor. Jonathan was still sleeping peacefully. After my husband left, I laid back down with Jonathan, that's when I noticed he was breathing fast. Jonathan then sat up and he seemed very drowsy like he was falling back to sleep. He did this a lot in his sleep when he would be dreaming so that still didn't alarm me. I laid him back down and what alarmed me was when I saw him try to sit back up and he couldn't. His little arms just shook. When I turned him over and looked at his face and eyes, I was terrified. His pupils weren't equal and his eyes were only half open. Frantically, I called the doctor who told me to bring him right in. My neighbor drove me. I don't think the doctor realized on the phone how serious Jonathan was. The minute he saw me with Jonathan he drove me to the ER which was just across the road. When I got there, they made me leave and fill out admission papers while they stabilized Jonathan. They said for us to wait until they finished running some tests on him. It seemed like forever. I paced and paced and cried.
My husband was saying he would be okay; they'd give him some medicine and make him fine. All I could say was "you didn't see how he looked." Finally the doctor let us back to see Jonathan. He said he had meningitis and he was going to transfer him to Children's Hospital via lifestar helicopter. Our baby was lying there not responding. They wouldn't let us ride with him in the helicopter; we would have to drive to Children's Hospital-1 hour away. The doctor was going to stay with Jonathan until the helicopter arrived. I didn't realize even then how serious everything was until when we were saying goodbye to Jonathan and the doctor started crying and saying how Jonathan was like the son he lost. I knew things were serious then. We drove over 100 mph to Children's Hospital. When we got there everyone was so quiet. I thought Jonathan had already died. They told us he stopped breathing on the flight and they had to intubate him. He was now on a ventilator. They told us then his condition was serious, he had a 50/50 chance of survival. They said they knew the right medicines to give him, but the problem was as the antibiotics worked on the bacteria to break it down, toxins would be released which increases the pressure within the brain. An EEG and CAT scan was scheduled for tomorrow. We went in to see our baby, hooked up to all those monitors and machines. Our baby lying there in a coma. It seemed like a dream. How our once healthy son could be lying here lifeless, not responding to anything. That evening we decided to Baptize Jonathan, this was the last reaction we ever got from him. During the ceremony, his pulse rate shot up real high and every alarm went off. I feel he was telling us he knew we were there and he knew what was going on.
The next day, Saturday, August 29 the EEG was done. It showed only a small amount of electrical activity in the left side of the brain. The doctors said if he survived he would not be able to function. The doctor said he would re-evaluate on Sunday. On Sunday, the neurologist examined Jonathan and there were no responses at all. He declared Jonathan brain dead. How can bacteria just completely wipe out the mind? We decided to take him off the ventilator at 11am that day. Our baby had fought long and hard. It was time to let him be with Jesus now. My mother asked me if I wanted to hold Jonathan when they took him off the ventilator. I didn't think I could. I was so scared. To hold my precious baby so lifeless. After the ventilator was removed, Grandma rocked Jonathan for 2-3 minutes then my husband wanted to rock him. His heart was still beating, my baby still fighting. I did decide to rock Jonathan. I held him close, sang to him, and rocked him. Not scary at all. It felt natural, like I had done so many times before but never would do again. Jonathan died peacefully in my arms. My husband said he never would go to sleep until mommy rocked him.
Now, the hardest thing to get used to is the quietness and the change in routines. I often look at the clock and think - we'd be taking a bath right now, or playing outside right now, or getting ready for bed. I too read everything I can find and talk a lot about Jonathan. I find myself listening to the same song over and over - Tears in Heaven- by Eric Clapton. We played this at Jonathan's funeral. The phrase “beyond the door there's peace I'm sure and I know there'll be no more tears in heaven" fits Jonathan so well. Everyone has been very supportive. You don't know how many friends you have until something like this happens. I don't blame the doctor for not finding this earlier.
Jonathans’ doctor see's 20 kids a day with the same symptoms. He has been so supportive. He stayed with us at the hospital everyday and only left for emergencies. He continues to be involved in our lives, taking us out or having us to dinner to keep us occupied. He blames himself. He's told me he doesn't know if he can continue to be a doctor. He says when he sees my husband and I coping, it helps him to cope. I blame myself as a nurse, wondering should I have seen something or pushed for blood work. Would it have made a difference in the outcome? Questions I will never have the answer to. Does the pain ever get any better? Do you ever feel happiness again? These are questions I ask myself frequently. I wonder about having more children. How will I ever get past the fear when they get a runny nose or the cold? The thought is terrifying. We have decided to get pregnant right away. We can never replace Jonathan, but if we have another child half as precious as Jonathan, we will be blessed. I also hold faith that we will see Jonathan again. Jonathan's playmate next door who's five years old said it best" Don't cry, Jonathan's a little angel now" and that's how we will always think of him.
If you ever want to talk or ask us questions our e-mail address is email@example.com.
Ann and Dale Pennycuff
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