Noah's Road

When Noah was rushed to the hospital by ambulance nearly a year ago, on April 20, he was in the midst of a catatonic seizure. The paramedics were unable to get the seizure under control, and it wasn’t until he was in the emergency room at INOVA that the doctors were able to stabilize him. The damage from the shaking was so extensive that seizures ravaged his little body for days. For this reason Noah was put into two separate medically induced comas to allow his brain to rest, with the hope that the seizures might stop. He was hooked up to an EEG and his head was bandaged. As my best friend recently wrote, “He looked like a Frankenstein baby.” It’s true. There was nothing innocent and precious about him anymore; he was tragic, his face pale and his eyes crusted with old tears. Noah was hooked up to the EEG for more than five days. In that period of time we never left his side. Our friends and family learned how to read the EEG, to recognize what a seizure looked like so that they could push the event button should they see one. Sometimes it was obvious when Noah was having a seizure. His eyes rapidly would open wide, but they were vacant. After a minute or two they would close again. It was terrifying to watch. If you look at the pictures we have posted on the site, you can see what Noah looked like then. Every once in a while I will glance through my pictures on my computer and accidentally stumble across one of those old photos from the hospital. It’s hard to imagine that little boy, that lifeless bandaged creature is my baby.

Last week, however, I didn’t need to look at old pictures from a year ago to revisit any of those dark memories. In an effort to get the seizures that Noah continues to have under control, his neurologist ordered a 24-hour video EEG. We checked into Children’s National Medical Center at 1 PM on Wednesday. Noah was in a great mood and had been all day. Though he continued to have head drop seizures – the usual 20 a day – he laughed and smiled, eating snacks while we waited. But hours later that happy toddler was gone. Noah had dozens of leads stuck to his blonde hair with paste and his head was covered with several layers of bandages. A white tube covered his head and the wires hung from the top, connected to a 30-foot wire. Video cameras were positioned in the hospital room so the doctors could watch Noah’s activity as he had seizures that were monitored on the EEG.

Within hours Noah was inconsolable. His face was swollen and red, tearstained. He wouldn’t eat, even though I’d prepared snacks and easy meals that could be microwaved (I didn’t want him to have terrible hospital food). Mike and I tried playing with him, walking with him, holding him and rocking him. He had moments when he’d smile, and in those moments Mike and I could breathe. But for the most part Noah was miserable. We threatened to leave the hospital in the middle of the night because we couldn’t bare him being in so much pain. He hadn’t slept. We hadn’t slept. It was the worst night we’ve experienced since Noah was first released from the hospital.

The next day, after the neurologists had finally reviewed the EEG, Noah’s bandages and the leads were removed. His forehead is now covered in circular scabs from where the leads pushed into his soft skin. Days later, he still has dark circles under his eyes from the lack of sleep that night. The doctors have ordered a different drug, but so far we’ve seen no improvement. This could be because Noah is also still on an old drug. We’re awaiting an official visit with his neurologist to discuss where we go from here. In the meantime, Noah is a zombie. He is so tired. He stands and his eyes involuntarily close on him – this is after a nap, when he should be alert and rested. I’m so terrified of ruining Noah’s incredible palate for food (he’ll eat anything from blue cheese to black olives to salmon) that we’re giving Noah his new drug in chocolate pudding. It’s amazing what a parent will do and what rules they’ll break when desperate to get a drug down their little one’s throat. Noah still doesn’t drink juice, as I believe it’s full of unnecessary sugar, and yet he gets a teaspoon of pudding morning and night now! But I’d rather him learn to hate pudding than something nutritious.

That night in the hospital was so reminiscent of Noah’s stay in the PICU that Mike and I were both emotionally closed off. When we were finally rushing out of the hospital, literally moving as fast as our legs would take us, I broke down. I cried with relief that we were leaving. It felt as though we’d been there a week. Those nights in the PICU a year ago felt as though they were only moments before. Our hearts were raw. They still are.

We will never forget what happened to Noah, but sometimes the pain just never seems to cease, especially when we watch Noah miserable and we are helpless. In so many ways we lost control of Noah’s life when he was shaken; the seizures, and his blonde head wrapped in white bandages while he wails is all too terrible a reminder. But I try to remember, even in bleak moments and through the darkest nights, that we are doing everything we can. We might not have control over our lives, not really, but we are taking each day and seizing it, all to make a better life for Noah. That’s all we can do.

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From Mike:

For those who doubt:  (This is a difficult article to read about yet another case of Child Abuse and SBS)

http://www.washingtonpost.com/wp-dyn/content/article/2010/03/29/AR2010032903198.html?hpid=newswell

This entry was posted on Sunday, March 28th, 2010 at 10:00 pm and is filed under Uncategorized. You can follow any responses to this entry through the RSS 2.0 feed. You can skip to the end and leave a response. Pinging is currently not allowed.