Many of you have contacted me to see how Ella made out at the hospital. First and foremost, thank you. The amount of people who offered to help with the boys and bring us anything we needed was overwhelming. It was a crazy four days and we were lucky to have help to get us through. I say it all the time and I will say it again…it takes a village.

After four days in the Hackensack Epilepsy Monitoring Unit we did walk away with some changes in Ella’s care plan, but baby girl didn’t make it easy. Ella was admitted from Sunday afternoon to Thursday afternoon. In that time she had a grand total of one seizure. It happened after we arrived on Sunday. Oddly enough, we were with her the entire time and had no idea she had one.

Monday morning her doctor came in and said if she didn’t have more episodes by her second dose of keppra Monday night, he wanted to reduce the medicine by half. That meant skipping the Monday night dose entirely. We weren’t surprised, as we were told this was the plan before we were even admitted. To make recovery from a possible seizure easier, they also told us that an IV would need to be put in her hand. As if she wasn’t annoyed enough having the probes on her head, I thought for sure the IV would push her over the edge.

Monday night came, we skipped a dose. Tuesday, she was off meds all day. We were told to move her around to increase activity since a majority of her episodes were at school. They also tried some things to trigger episodes and brought in mats and toys to keep her busy and engaged. Wednesday morning the doctor came in and told us Monday night, and all day Tuesday, showed no episodes.

At this point Ella had us stumped. Most days at school they were recording multiple events that were lasting a minute or longer. We wondered if it might be stress related but there is no consistency in when she has them or factors that bring them on. The doctor then asked if what in fact they were seeing were seizures and not something else? That sounds like a medical question we were unable to answer.

Here is the kicker. From the first week Ella started the keppra we saw her personality change. Her mood went from mostly happy to being more frequently angry and irritated. As time went on her body began making weird movements. She was put on vitamin b6 to help with the moodiness. Each time I mentioned the body movements I was told that it was not a typical side effect of the medicine. Over and over again I kept hearing that. Each time I became more and more frustrated.

The doctor reminded us that Ella’s admission was a voluntary one and when we thought she was going to hit a wall, we should give twenty four hours notice. That happened Wednesday. She was put back on her meds and scheduled for a Thursday discharge. We had all had enough and I am honestly not sure what more we would have seen had we stayed longer.

Thursday morning the doctor came in. He said his initial plan was to keep Ella on keppra and asked if we were okay with that? I said no. We talked more and decided that we were going to try Ella on a new cannabis medicine. He said he has seen great success in his patients.

Thus begins our new journey. The medicine will be here in a few weeks and we shall see what happens. To get Ella mostly episode free and back to her old self is all I have been wishing for. Change can be scary but so can the unknown. We are ready to see where this takes us.

I can’t say enough about Ella’s new neurologist or the nurses in the EMU unit. Everyone was so kind, wonderful, and attentive. It’s by far the nicest children’s hospital we have been to. We really felt like our voices were heard and that Ella got amazing care.

After a year of nothing, this is something. Thanks for joining us for the ride.

Follow our journey @ http://www.instagram.com/zurlnick_five

Our new podcast is coming soon. Follow on Facebook @comedic chaos and on Instagram @comedic_chaos