Meningitis/Polymicrogyria, Part I

I’ve been asked about Zach’s journey countless times. Each time I’ve tried to write it down, I realize how multidimensional and complicated it was. I’ve written small pieces about it (linked in the post below), but not all in one place. I’m going to try my best to organize events as they happened. As much as this time is burned into my head, parts are still a blur, probably blissfully. Since it is a long story, I’m going to do this as a series.

Part I

When Zach was almost four months old, I was at home with him and the big kids. My van was in the shop, and I had a little baby who had a suspected ear infection. I had seen some ear drainage on his crib sheet, he was running a fever, and was making the most horrible screeching sound (the thing about this sound–it haunts me. It was the sound of my baby in excruciating pain. No sound he has ever made since comes remotely close to what I heard that day. When I think of that sound, it makes me want to cry. He was trying to tell me the only way he could that something was terribly wrong. Since then, the sound of his cry, any cry, comes to me as a relief, because it means he is still with me, and he is not suffering like he did that day. I am so grateful that in the next days, and everyday since, he never sounded like that again). I called the doctor and had an appointment for later in the afternoon when I would have a car to use. I laid the big kids down for a nap so I could focus on Zach. We were sitting together in the big chair, him crying, me trying everything to calm him down. I had given him acetaminophen, but clearly that was getting us nowhere. He didn’t want to nurse, and cried harder when I tried to lay him down. If I held him completely still, that would buy about ten seconds of reprieve. I rubbed his back, tried singing to him, nothing worked. Then it seemed like he had finally calmed down enough to fall asleep. I was ready to sit back and close my eyes, but I was unsettled by his silence.

I looked down at him and his eyes were still. His skin looked like he was made of wax. His arms and legs were rigid. I tried blowing air into his face and got no reaction. I ran him to the bathroom and splashed water on his face, and again, no reaction. The next moments are a blur, but I know in the span of a few minutes I called an ambulance, the doctor, his dad, and my aunt. I needed someone who could get to the house quickly and be with the big kids. I knew my aunt was at my mom’s house helping take care of my grandpa, and when I dialed the number I was hoping and praying beyond everything that my grandpa would not be the one to answer. I did not want him worrying about this like I knew he would. Fortunately, Nancy answered, and I told her something was wrong with Zach. She showed up in about three minutes. In the two minutes that followed, my sister and my mom showed up, followed by the ambulance. The rescue response time felt like it took forever, but probably only took about five minutes. An EMT ran out of the ambulance and waved me in.

I ran from the house into the ambulance, shoeless, carrying Zach in a towel. At this point, his right leg was twitching rhythmically. It was disturbing. He started to come to during the ambulance ride. The EMTs checked his vitals and took his history. We got to the hospital, and that was when I realized I wasn’t wearing shoes. They rushed him to a room and the staff went to work. They drew blood, took an ECG, listened to his heart, took a urine sample (which is interesting on a baby), and all kinds of stuff. When they finished, he was back to being alert and was hungry. We finally got to sit back and nurse while we waited for answers.

His blood tests started coming back, and they showed that his white blood cell count was slightly elevated, but not to a level that hit any thresholds. The ER doc wasn’t satisfied with that, and had also ordered another test on the blood to measure the CRP, another marker for inflammation (forgive me if I got any of that wrong). That test showed there was some kind of infection at work. At this point, we learned that the seizure probably sent him to the ER early in his infection, which is fortunate. At this point, the doctor was trying to pinpoint the infection, while also investigating what could have caused the seizure. He went for a CT scan of his head for more answers.

After the scan, the questions started. We were asked if I had been sick during my pregnancy, or had traveled abroad during pregnancy, if he had ever sustained any head injuries or birth injuries. All of these questions raised the hairs on my neck. I had been sick with viral encephalitis at 16 weeks gestation. What I had been told wouldn’t affect the baby was turning out to be the cause of a huge life change. The CT scan showed two calcified pin points on his brain that are usually attributed to a head injury or exposure to infection in utero, and we zeroed in quickly on what happened during my pregnancy.

After this news, the ER doc decided to perform a lumbar puncture to test for meningitis, having not found any signs of infection anywhere else. I had heard such horror stories of LPs and I was a mess. The staff asked me if I wanted to leave the room, and I couldn’t leave my boy. I looked away but held onto his foot. I kept thinking of how frightening this must be for him and I couldn’t leave. I wanted him to know that mommy was still there. After the tap (which looked like she took about seven test tubes of fluid–I was amazed there was any left), he calmed down. I later learned that removing the fluid probably relieved a lot of built up pressure and eased his pain. It was a relief to see him more comfortable. The fluid was sent of for testing, but the doctor did note that it was cloudy, which suggested meningitis. I have lived with a fear of meningitis for a long time. It always scared me how easily it could be transferred and how quickly it acted. I always worried about my kids contracting it, and would it be caught in time. And I was living it.

As we thought things were settling down, my mom and my sister left to bring some clothes and overnight things because they knew there was no way I was leaving his side. Zach had made the staff working on him to fall in love with him, as he is known to do. A nurse began to tell me about the treatment plans for meningitis if the test showed that was what he had, and what some of the side effects could be. As we were talking, a CNA began taking his routine vitals again, and noted that he was starting to seize again. This time his whole body twitched. People appeared out of nowhere with equipment. There was a charge to the room and this marks the height of my fear. Seeing a crash cart rolled in caused me to come undone. He came out of this seizure, and the decision was made to send him to Children’s Hospital in Omaha. He was started on IV antibiotics, three big ones, as the diagnosis came back that he had bacterial meningitis. It would take culturing the fluid to identify the bacterium, but they hit him with the big three to try to start wiping out the bug. My mom and my sister arrived as Zach was seizing, and my mom called in the minister (that story is written here).

That ended our time at the ER. Soon I was in another ambulance with him, this time with shoes, traveling to Omaha. A forty minute drive took forever. The driver was nice and tried to distract me from the events. I kept looking back to see my little man on a gurney, sweet talkin’ the lady EMTs. We arrived at Children’s and he was admitted to his room. Here he started to woo the nurses (a common theme with him), and settled into sleep. I “slept” in the room with him, feeling the closest thing to peace since the day before. But we were just getting started.

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