A tough week

precious feet before the poking began

I stood peering through a wire file rack, tears streaming down my face, as three doctors held down my precious baby. She was screaming to the point that her cry had dwindled to a low throaty almost mute sound. She had run out of tears. Her face was red. Her arms, legs and feet were bruised with puncture wounds from way too many failed attempts at placing an IV in her tiny veins. The doctors had asked me to help hold her down and keep her calm, but I refused. I was torn. I didn't want her to think I had abandoned her to let these horrible people hurt her. But I also didn't want her to think I would partake in anything that would traumatize her so much. I want her to know I am safe. I want her to know I won't hurt her. I want her to know that she is always protected in my arms.

So I hid behind the file rack. But much like when you cover your eyes because something is too tough to watch, I realized that I couldn't help watching. I needed to know that despite her pain, she was still there and still ok. So like when you open your fingers and peek through to watch the train wreck, I watched. And I cried. After failed attempts by four nurses and one doctor, one man was finally able to successfully place the IV on the first try. He then called me over and with much sincerity, looked me in the eyes and said: "I'm sorry that she had to go through this." And although it didn't make the pain go away for me or for her, it was comforting to know that this doctor seemed to care. There are too many who don't.

hanging out in the ER

We had checked into the hospital, via the emergency room at 8 am on Monday morning. It had been a bit of journey to get to this point. About two months ago, Emerson started having strange episodes that we feared might be seizures. Her risk for seizures is very high considering her history. Each time we went in for an EEG, there was not sufficient evidence that she was having seizures. But I knew in my gut that she was. So a few weeks ago, we went in yet again for another EEG at Children's Hospital Los Angeles. And finally, my fear was recognized. Not only did the EEG show she was having seizures, but that they were the worst possible kind, infantile spasms. Her neurologist seemed very lackadaisical about the whole thing and prescribed a medication that I knew wasn't even a frontline treatment for these very serious and devastating seizures. I knew I needed a second opinion and a doctor I had more faith in. I knew time was of the essence.

These are the infantile spasms. I share this video to help others wondering what these kind of seizures look like who may stumble upon my blog.


I had been trying to get in to the epilepsy specialists at UCLA's Children's Hospital with little luck. I knew I could try harder. So I put on my research hat, a talent of mine, and went to the internet. It didn't take much to find the direct email address to Dr. Sankar who is the head of that department. I took a shot in the dark and emailed him directly. Within a few short hours, he responded and the ball begun rolling. That was last Thursday afternoon and by Friday morning the plan had been made to check in for testing first thing Monday morning. We expected to stay only 24 hours for the EEG, but we ended up staying four days for a 72 EEG as well as a PET/CT scan and MRI.

EEG electrodes literally super glued to her head

So there is good news and bad news. The good news is, no hypssarhythmia showed up on the EEG. This is the very specific pattern that shows up on the EEG when a child is having infantile spasms. This doesn't mean she didn't have it before, nor does it mean it can't show up in the future. But we live in the moment, and for now, it is not there. And that is glorious. But she is having seizures. We haven't gotten the full breakdown of what types of seizures she is having, but we know there is some activity. So last night we started an anti-convulsant medication called Topamax. Finally last night, we both got to sleep in our own beds. What a wonderful feeling that was.

after the first day, a mesh hat was added to keep the electrodes secure against her head

Today, it is back into reality with a bang. In the hospital, it seems like the world stands still. But once I opened my computer, I realized it didn't. I have over 300 emails sitting in my work account and another 200 in my personal account. I have a list of projects that would have kept me busy all week, but now need to be done in one day. I wish I could catch up on the sleep I didn't get this week in the hospital. But I have to take advantage of the 8 hours I have a nurse today and try to get back on top of work.

in recovery, just waking up after sedation for the PET/CT and MRI

All this while, I feel the pull of my sweet, innocent, beautiful child. Because I know there is only one thing I can do to comfort her. I feel helpless in so many ways when it comes to her, but I know that holding her provides her comfort. It seems like doing anything but that is so completely insignificant.

But we will march on.