Noah's Road

We keep a notebook on our hutch in the family room. It’s a green marble notebook that a hospital staffer gave me a year ago when Noah was in the PICU. On the first page is a letter I wrote to Noah the day he was shaken. I sat Indian-style on the burgundy foldout chair in Noah’s hospital room, the lights from the machines next to Noah blinking, and the pale blue light from the courtyard softly illuminating the notebook. I told Noah how much I loved him, what a joy he had been to me from the moment he came into my world. I’m not sure what I thought would come of the letter. Certainly, I didn’t think it was a good-bye, and luckily, it wasn’t.

On a Wednesday night, two days after Noah was admitted to the hospital, as my mother-in-law and I were settling down for the night, the PICU attending gave us his opinion on Noah’s condition. He told me that Noah would have a seizure disorder and that he likely would always be on medication. He would have learning problems. In a cool, calm manner, hands in and out of his pockets, he shattered my world even more. I had only just begun to wrap my mind around what had happened to Noah, had only just begun to breathe, when this doctor tossed in front of me a future I couldn’t bear to imagine.

I quietly walked into the hallway and called Mike. “He’s saying too much,” I managed. Mike, who had gone home to get a shower, was struggling to understand what I was talking about. I wasn’t crying, yet I could barely speak. “The doctor,” I said. “He’s saying too much.” Mike asked me to hand the phone to the doctor, which I did. After reprimanding him, Mike told him to leave the room, to leave us alone. We asked the hospital to restrict him from coming near us again. I hated him. I couldn’t pass him in the hall without wanting to crawl out of my own skin.

“Dr. House,” as we referred to him, threw me into a dark hole. For the remainder of that night I  fluctuated between hysterical and catatonic. I curled into a ball. My mother held me. My mother-in-law cried beside me. My mom tried to put me to sleep in an empty hospital room in the cancer ward. But I couldn’t sleep. If I let my mind run free, I thought of Noah. I thought of him lying in that room. I didn’t want to breathe any more. It hurt too much. To distract me from thinking about Noah, my mom and mother-in-law stayed with me all night and talked to me about any silly thing they could think of. They talked to me for hours, and hours. The next day I couldn’t go into Noah’s room. I stayed wrapped in a blanket in the waiting room. There was always someone there to talk to me and distract me. I couldn’t be left alone. My mind was not to wander.

Later that morning, the hospital psychiatrist came to me. He brought me into a small room and we talked. Dr. Kronen – who will always have a special place in my heart – helped me learn that I needed to reorganize myself. In a steady voice, his hair tied into a pony tail, he told me I needed to take my gift for analyzing and focusing on the details and use them to regain some sort of control, some element of positive. I took that advice and by that evening, armed with my notebook and after nearly an entire day without the ability to walk into my baby’s room, I stood by Noah’s bed side.

During the next 16 days that Noah was in the hospital, the notebook never left my side. I made it my mission to understand everything that was going on in Noah’s hospital room. I wrote down what machine monitored what. I wrote down every medication he was administered, the time and the dosage. Eventually, all of the family members did this. Once Noah was placed into his second coma and we were taught how to read the EEG, we recorded all of Noah’s seizure activity. It gave us a tremendous amount of power to work as Noah’s advocates. It gave me a purpose. It helped me to stay strong.

A year later, we record every seizure that Noah continues to have in that marble notebook. We have been searching for a drug to control Noah’s myoclonic seizures, which for him are head drops. He’s had as many as 30 a day. Right now, on the fourth drug we’ve tried, he’s averaging around 12 a day. Every day we mark each seizure. The tally is about 450 seizures a month. It can be overwhelming and it is terribly scary, but the notebook empowers us.

If you were to flip through the pages of that notebook, the numbers themselves tell a story – an unhappy one. The seizures haven’t stopped. It is unlikely at this point that another drug will help. But we refuse to give up. Dr. House won’t have the last word, at least not yet.  The next step is the Ketogenic diet, which will be an extraordinary challenge, but if we can control the seizures no cost is too great, no challenge impossible. In a couple months, when we flip through the pages of that notebook, let’s hope the numbers tell a new story, with an ending that reads ZERO.

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