I wasn’t sure what time it was, but I knew it was really early. I hadn’t slept yet. I was too afraid to roll over and check the time and wake Maddi, but I knew it had been hours. This was the first time she had slept more than an hour at a time, and I was afraid of disturbing her. I was terrified to sleep. I laid there and watched her breathing. Counting the seconds between breaths. Watching for any sign of a seizure. I needed something to bring to Dr. Ryan in the morning. I needed to convince her that something was really wrong with Maddi, and that I was scared to take her home.I had talked to my Dad earlier in the day, and told him it was as if my worst nightmare was coming true. From the moment my kids were born, I started to worry about the silliest things. Bedtime was always a source of anxiety for me. Would my kids stop breathing in their sleep? Would they get caught in the blankets? Would someone come and steal them from their beds? The craziest scenarios run through my head as I lay down to sleep, and before this, they were just crazy scenarios. Now, these are legitimate worries. Would Maddi hurt herself in the middle of the night? Would she hurt us? Would she stop breathing? Have a seizure and we don’t catch it?
I continued to study her while she slept beneath me. 1…2…3…4…5…6…7…8…why isn’t she breathing??…9….10….11….12….13…Oh my god, she’s not breathing, should I shake her?….14….15…Maddi’s whole face twitched, her eyes flew open, she gasped for air, and sat straight up. At that point, I was scared. I shook her shoulder, “are you ok?” She looked at me, then laid back down and closed her eyes.
It was 4am. Did she just have a seizure? Sleep Apnea? Was that reason why she was waking in the middle of the night and raging? Could this be something as simple as compounded sleep deprivation? Were her seizures, even seizures? I laid there and could not shut my mind off. I tried to think of every possible reason to explain Maddi’s erratic and aggressive behavior in the last few weeks. I can’t put into words the amount of anxiety I had over this situation. Knowing something was wrong. Wanting answers. Feeling powerless.
Later that morning, we headed over to see our Pediatrician. She went over our hospitalization and discharge, and mentioned the NMDA test results. She confirmed what I knew; they were abnormal. She said that she was unsure of what that meant, and had been reading literature studies that morning, and the studies indicated that Maddi could have an Ovarian Teratoma. My heart sunk! Dr. Ryan explained that we would need to take Maddi for an ultrasound as soon as possible, and if a teratoma were found, an easy surgery to remove it should alleviate the symptoms she was experiencing. She went further to say that she was referring us for another EEG, Sleep Study, and a follow-up with Neurology.
I sat there and listened, but I was numb. I don’t know what I had expected. I had this fantasy that we were going to show up and she’d miraculously have answers, and Maddi would be instantly better. I think she could sense my disappointment, because she reminded me that unfortunately life was not like an episode of “House.” Finding out what was wrong with Maddi was going to take time, and we just had to be patient.
We left with our marching orders, and I got in the car and called Jason to update him. I had just pulled out onto the main road when I heard Maddi scream out in pain: MOMMY!! I was on the phone with Jason, and I looked up in the rear view mirror to see Maddi stretched, tense, jaw clenched, eyes wide, making a gagging gesture, and her hands making a “piano playing” motion. She was having a seizure. I pulled over and waited for it to pass. When she came to, I asked if she was Ok. I asked if she knew what happened. She shook her head and asked me to turn up the music. So, I did. Then we headed home, because what else could we do?
Through the course of the afternoon, multiple clinics called to schedule our follow-ups. Dr. Ryan had been working behind the scenes to rush the tests, and for that I was thankful. I debated sending her a text to let her know about Maddi’s seizure, because I felt as if I were becoming a bother. I knew she was doing her best, so I didn’t want to pester her. So I emailed her instead, figuring she would get to it when she could. By this time, I was at work, and struggling to focus. I was so tired and overwhelmed, that it was hard to focus on others.
Shortly after sending my email, Dr. Ryan responded that she was talking to Neurology about Maddi, and at this point the option was to readmit Maddi in order to work her up further. She then followed up by calling me and telling me that Maddi’s test results were more concerning than she realized earlier, and that the Attending Pediatrician from the Hospital would be calling me to talk about readmitting Maddi, and basically apologize for dismissing us the previous weekend.
It turns out, that as she was following up with the Neurology resident regarding my email and the repeat EEG, the Pediatric attending from the weekend was following up with the head Pediatric Neurologist about the NMDA receptor test results. He had received them earlier that morning, and was very alarmed with the results. He later told me that Maddi’s Titers were the highest he has ever seen. So, it was decided. Maddi would be readmitted to the Hospital as soon as possible to run additional tests and get a second confirmation so that they could begin treatment for Anti-NMDA Encephalitis.
And there is was.
I wasn’t a bad parent.
Jason and I didn’t cause this.
We had a reason for the hell we had been living for the last 8 weeks.
And in that moment I felt relief, like a weight was lifted off of my shoulders. We had something to go on. Something to explain what was going on with Maddi.
but then it hit me.
Her Brain is sick.
What if she was never the same again? What if she couldn’t go to school? What if this compromised her learning? Her dancing? Her personality? What if this was fatal??? I called Jason in panic. They think she has Anti-NMDA Encephalitis and they want to readmit her to the hospital!
I rushed home to prepare a bag, and try and prepare Maddi for what was about to happen. She was building a puzzle with my Mom. I tried my hardest to explain what was going to happen in the simplest kid terms. Maddi lost it.
We already went there! I don’t want to go back. We already went there!
I sat on the kitchen floor, her wrapped in my arms, my legs over her lap, trying to keep her from kicking me. She flailed and screamed. I tried to console and comfort her, and eventually she calmed. Eventually she helped me pick her favorite PJs. Her favorite stuffed animal. Jason came home, and we left in separate cars, in preparation for only one of us to come home tonight.
On the way to the hospital, I prayed out loud to God. I begged him; Please let this be the answer. Please let the doctors listen to us this time. Please heal Maddi and give her back to us.
I had faith that God would lay his hand on her, and our family, and that this would allow us to get answers.