We loaded Maddi in the car, unsure of what was going to happen, but also preparing for an agitated little girl, who absolutely did not want to go to the hospital. We tried to make it as fun as possible, but how do you make a trip to the hospital fun? The whole way there we dodged Maddi’s cries from the backseat: I want to go home.
Yeah. I want to go home too kid. I want you to be all better. I want our life to be normal again.
As we got off the elevator on the Pediatric Floor, Dr. G, the attending Pediatrician who had discharged us, and had received Maddi’s results from the weekend, met us and brought us to our room to get settled in.
From that point forward, it felt like everyone was interested in Maddi, or, more like her diagnosis. We learned that Anti-NMDA Encephalitis was a pretty rare diagnosis. We were told that compared to PANS/PANDAS, which is very controversial, NMDA was a tried and true diagnosis, with identifiable tests and treatments, but due to the vast myriad of symptoms, it is almost always overlooked (hence the rare diagnosis). Dr. G also told us that Maddi’s titers were the highest he has ever seen, and it made him concerned that there was an ovarian teratoma. Maddi would have an MRI first thing in the morning. Dr. G stayed in our room for close to an hour talking and asking questions, then his team of residents and fellows followed to ask more questions. Then the Neurology team, followed by nurses, EEG Tech, etc. It felt endless. I know I should have felt relieved, but I was angry. I grew angrier with each person who came into the room to “talk” about this rare diagnosis. I wanted to shout at them “WHERE WERE YOU DAYS AGO?!” Days ago we were just bad parents with a spoiled kid, but now, now we were a “medical mystery,” one for the books. A “case to write-up.” These medical professionals had no idea what our life had been like. They had no idea how Jason and I had not slept more than a few hours each night for weeks. That I cried myself to sleep every night, praying for relief. They had no idea what it was like to watch something you love, turn into something you couldn’t bare to be around. They looked at Maddi and saw a research write-up, not a hurting, helpless child.
I looked at my girl, sitting on the bed. Her face was so thin. I could see her shoulder blades through her shirt. Even her wrists looked smaller. Her chubby baby face was gone. She looked so grown-up. I chuckled and told Jason that even 5 year olds were not exempt from the stress of something like this. It was sad to think that this situation has forever changed her. Long after her behavioral and psychiatric symptoms were gone, this would be something that would forever be apart of her. Maybe it’s an exaggeration, but I felt like a piece of her innocence was gone. She was “tainted.” This was something that no amount of Therapy, Love, Support, would erase. I worried about her future, because like all parents, I have dreams for her. I have looked forward to her growing, and watching her explore the world. I was excited to see what she could accomplish and overcome. Even now, as I write this, I’m saddened by the thought that this illness may have forever changed her trajectory. Although I know that I can trust in God, that he knows what her journey will be, I can’t help but mourn this loss of her innocence.
After we met with all the Doctors we had a plan for the night. Maddi would have a video EEG to catch the seizure activity, an MRI in the morning to screen for a Teratoma, and a test on her CSF for NMDAR titers. They wanted a second confirmation of this diagnosis before starting treatment. We took Maddi to dinner in the cafeteria as we waited for our new room, and then we said good-bye to Jason, and settled in for the night. I was nervous about her becoming aggressive and agitated through-out the night, so I pretty much gave in to everything she wanted. Watch Frozen 6 times in a row? You got it kid. After having a bout of aggression, that I was able to diffuse, she settled into sleep. I turned out the lights and tried to do so myself, but was awaken only two hours later with her yelling and trying to get out of bed. It took me and 3 nurses 45 minutes to settle her down. AE gives kids super human strength. My little 39lb preschooler was like the hulk (her favorite superhero, btw. see below!)
Around 6:00am on Tuesday morning, Maddi was finally quiet and still. I had the thought of just turning off the TV and rolling over to go to sleep, but something told me to get up and walk across the room to make sure she was sleeping (her rails on her bed were padded, so I couldn’t see from where I was sitting.) I cringe to think about what would have happened if I hadn’t have gotten up.
I looked down to find Maddi unresponsive. Her eyes were wide, and they were deviated to the right. Her arms were curled to her chest, and she was foaming at the mouth. I panicked. I pressed the nurses call button, threw on all the lights, touched her face, screamed her name. It felt like forever before they got there, and while I waited, Maddi started to tremor all over. She never responded to me. She never responded to the nurses. Thankfully, a Neurology Resident was on the floor and was able to step in. They watched her for 20 minutes while she continued to have a Grand Mal Seizure. All the while, needed positive pressure oxygen to keep her stats in the 90’s. Without it, she continued to “destat” or drop in oxygen saturation. The resident finally ordered Ativan when Maddi began to violently seize. I mentioned that Maddi ended up in the ICU with respiratory failure after Ativan. I’m not sure she heard me.
Everything that happened next was a big blur.
I sat there feeling numb as I watched the room transform from quiet to chaos. Maddi stopped breathing, and the ICU rapid response team was called in. She was intubated. They struggled to get her stats up. I sat on the sidelines stifling my cries as I watched my baby being surrounded by nearly a dozen doctors, nurses, etc.
A wonderful, gentle woman, who identified herself as a nursing instructor sat next to me. She put her arms around my shoulders and quietly whispered everything that they were doing to Maddi. She was such a godsend, and so gentle. Shortly after Maddi was stabilized, and as the ICU team planned to move her upstairs, Dr. G came into the room. He noticed me sitting on the sidelines, and came up with his arms open as to give me a hug; “Well Mom, NOW we know,” he says. I looked at him with the most horrific look on my face, and pulled away, tears streaming down my face. I looked right at him and said, “I’VE ALWAYS KNOWN, YOU JUST DIDN’T LISTEN.”
By that time, Jason had arrived. I called him and told him that he should probably come before he heads to work, because I was unsure of what was going on. We headed upstairs, where we were told to wait outside the unit again, as Maddi was settled in. Shortly after, an anesthesiologist came by to talk to us about Maddi’s MRI. Again they were uncertain of when the MRI would happen, especially since she was being hooked up for a 24 hour EEG again.
WHAT? WHY? She just had a damn seizure, why do we need to have record of it?! I adamantly told him that I did not consent to an EEG before the MRI. The MRI was more imperative, and I was not comfortable with her being sedated and on a ventilator for any longer than she medically needed to be. Thankfully, he agreed, and he set off to talk to the attending to come up with a better plan. We were then allowed to head back to Maddi’s room. We saw our wonderful nurse from our first stay, Chris, who mouthed an apology as we walked by.
Yeah Chris, I’m sorry we ended back here too…
Nothing ever prepares you to see your child on a ventilator, tied to a bed, half naked, head wrapped in bandages. No matter how many times you’ve seen it before, nothing makes it any easier. I would have given anything and everything to trade spots with her. To be the one laying vulnerable on the table. To be the one hurting and sick. But, that’s the curse of being a Mother right? To love someone so completely, that your heart beats along with theirs. Their pain is your pain. Their suffering, is your suffering. Their helplessness, is your helplessness.
We were told that Maddi was resting comfortably. That she would have an MRI later that afternoon, and would remain on sedation medications and the ventilator, until they could control her seizures.
See, it’s hard for me to relinquish control. It’s hard for me to trust others, especially with my children. So, when a Doctor says, “X,W,Z” I want to know everything. I want all the knowledge they have, so I can feel comfortable in saying we chose the best choice. I’m not a good patient. I tried really hard to be, but I was frustrated and angry with this treatment team. Its hard to just take things on “good faith,” because a Doctor says so, especially when I was feeling like our daughter wasn’t a priority to them. It’s not unrealistic to want to feel that way, right?
The rest of this hospital stay was really uneventful. Maddi struggled with aggression once she was taken off of the breathing tube. Her MRI came back normal. She didn’t have a tumor, and she didn’t need surgery. She was eventually put on Risperdal to help ease her irritability, and it helped. She started to ask to eat food, and actually smiled quite a bit. She asked to go home about every 10 minutes, but did her best to be patient.
We did two doses of IVIG and 5 days of high dose steroids.
By Friday, things were looking up, and we were told we could be discharged the next day if we felt comfortable.
Of course I was nervous bringing her home, but after a long talk, Jason and I decided that Maddi would have the best chance at recovering at home, where she wasn’t so agitated by the environment.
Saturday came, and we were discharged with Steroid taper regimen, Trileptal for the seizures, protonix to protect her tummy, and Risperdal for the aggression.
We’d follow up with Neurology on June 1st, but in the meantime, coordinate with our Pediatrician, Dr. Ryan with concerns.
We left the hospital hopeful that Maddi was going to be better, but frustrated that no one could give us an answer as to her recovery time. No one could tell me when they’d determine she’d need more treatment.
Again, we were sent home and told that time would only tell as to how Maddi would recover.