Dr. S had a phenomenal bedside manner. After I sat down, waiting for whatever was about to be thrown my way, she calmly explained that the MRI showed that on the surface of Zach’s brain, he had areas of polymicrogyria. With all of the science knowledge I had acquired, I tried to pull this word up in my memory, but it was nowhere. As I was trying to dissect the word, she began explaining that the term itself is descriptive of the finding. Poly, meaning many, micro, meaning small, gyria, meaning wrinkles. What was seen on the MRI was many small wrinkles. She went on to explain that while I had viral encephalitis, it was likely caused by a TORCH infection. All signs pointed to cytomegalovirus.
And the mom guilt sets in. I had worried when I had viral encephalitis that it was going to have an affect on the baby. Little did I know, a simple infection that would normally be like an annoying cold had infiltrated the safe haven in my body for my baby. While it was causing my brain and spinal tissue to swell, giving me excruciating headaches, making it difficult to eat, and left me lying in bed for about two weeks, it was invading my little boy’s brain, altering its development and setting an unknown course for his future. I had been assured time and again that my illness should have no affect on the baby. Even if I had been told there would be, there was nothing to do. There was no medication I could take to block him from it. It was going to happen, and it happened. And I cried. I walked over to my little boy, who was beautiful and sleeping, and told him over and over again in my head that I was so sorry. I felt like I had failed him. I was supposed to be a safe place, his protection, and I failed him.
Dr. S couldn’t tell us much about this condition, and was going to have the neurologist come back to explain more. She did say that what comes with PMG can be developmental delays, learning disabilities, physical complications, seizures, and more. PMG was becoming more and more common, not because the number of cases themselves increased, but with improvements in imaging, the details of the brain were easier to see and discern. No one knows how many people have this who have mild symptoms. We only learned Zach had this because he happened to have an MRI. If he never contracted meningitis, who knows when or if he would have been diagnosed. He may have been diagnosed with global developmental delays, learning disabilities, and a seizure disorder. In a way, meningitis was serendipitous to his journey.
She also explained that this diagnosis was in no way related to meningitis. He just happened to be diagnosed with both within days of each other. With so much unknown to me about PMG, I didn’t know what to feel. I didn’t know if optimism was foolish. Honestly, I was afraid he wasn’t coming home. I had felt so secure that he was going to do well once the antibiotics were started and he was going to survive. Now, I was told here’s this condition few people know about and know less about what to expect. I was afraid his life may be spent in the hospital. I didn’t know. This whole time, from the ER in Lincoln, was a lesson in surrender. It was out of my hands. I had to leave it all up to God. I couldn’t control this, and only with God could I survive any possible outcome. If I had lost my boy, I don’t know what would have happened to me, but I had to let go and give it to God.
The EEG, or the event that made my boy look like Doc Brown, gave us more information about his condition. The neurologist read the results that his brain was “agitated” due to his seizures, which was normal given what he was going through. It also showed the seizure activity was isolated to the regions that had PMG, his parietal and occipital lobes. So far all of the information we received was descriptive only. It didn’t give us much of a prognosis. When your child is given a rare diagnosis, the internet can be a hostile place. With little information out there, it is hard to separate what is actually happening to your son with what could be happening. At this point in time, I had to stop looking because I seemed to keep stumbling on the horror stories. I wanted to find success stories, or at least stories that weren’t so severe.
A few days later, the neurologist met with us again. Mind you, she is not what I would call a people person. How she ended up in pediatric neurology and maintained her license for so long still astounds me. It became clear that she didn’t know much about PMG. She couldn’t answer questions, and told us not to expect much from him. Very dismissive. My inner Olga (my great-grandmother who raised a child with Down Syndrome in the 1930s against the advice of stupid doctors) was threatening to break through and bitch slap this woman. I don’t like it when people look at my children cock-eyed, so you can imagine how I felt about this. This session was a waste of time and left me feeling deflated, for my child and for humanity if there are caregivers like this in the world.
L, another favorite nurse, listened to me rant for awhile after that. She told me that not many parents were fond of this doctor. She was very diplomatic in the way she spoke of the neurologist. After seeing so many wonderful doctors who were great with children (and their neurotic parents), this was disappointing. Another nurse told me that after Dr. S gave us the news, she had to go to her office to be alone to cry because it hurt her too. Days later, when Zach was released to home care, we were given the option to continue or not continue with any of the providers. We were assigned a different neurologist who had a different approach that matched my philosophy: let Zach show us what he can and can’t do. If he can’t do something, push harder in that area. Celebrate his success. Let’s not give him any disability he doesn’t have.
So, we’ve been at the hospital for several days at this point. Each day he had a new hospitalist due to a scheduling quirk. While it was tough moving from doctor to doctor each day, they managed to transfer information to each other well. Each one was on the ball, though they each had different theories about his case. His resident, who had been with him from day one, pulled me aside to say “often, they are thinking aloud.” That helped me a lot. They weren’t adding to what he was dealing with, just trying to cover the bases and make sure everything was uncovered for his best care. The glue that held the doctors together was this resident, Dr. A. The first time I met her, I thought great, they gave me the cheerleader. She’s going to be peppy, was probably president of student council, homecoming queen, prom queen, barf. And you know what? She probably was. And she was freaking FANTASTIC. She was the first to suggest using a saline lock so I could hold him. She could recite all of his stats beautifully. She reminded the med students during rounds that even though mom was a biochemist by education, she may not be thinking in science terms at the moment, and to use real life language. She was one of the best Zach advocates we had. For me, she served to show me there is a balance out there, and for the horrible experience we had with the neurologist, we had a great experience with her. By now, she’s done with residency and providing wonderful care to someone somewhere.
This post may be a little scattered. But I’m almost done with this story. Well, the hospital and first weeks home parts of the story. Thanks for reading, and keep coming back! Part IV will be here soon.