I am sad to report that day two as an impatient was not nearly as great as day one. What’s even more frustrating is that almost twenty four hours were wasted in the ER without starting the EEG. In reality, we could have been home already and Ella could have had an amazing day here, instead of a super stressful day at the hospital.

As it usually does, her morning started off okay with Steve. They ate breakfast and watched some Goldie and Bear. We chatted on my way to the hospital, as we normally do, and he warned me that Ella was very close to reaching her breaking point. I immediately began mentally preparing myself. An Ella breakdown is exhausting for everyone, but especially when you aren’t home surrounded by things that normally comfort her.

After my afternoon update with Tom, my security buddy, I went up to Ella’s room and immediately knew today was going to be exhausting, for us all. Ella was on edge and tired. That’s never a good combination, and most times a recipe for disaster. I fed Ella her lunch and watched the rapid decline. About twenty minutes after she finished eating is when things got bad. Ella was frustrated and starting waving her hands in the air, making distress noises. As always, her next move was grabbing her head. Usually she pulls on her hair, but this time she couldn’t, and started to pull hard on her head wrap.

Despite multiple efforts to distract her, I was failing miserably. I went to the nurses station looking for suggestions. Thinking, she can’t be the only kid who gets upset and pulls on their head wrap. Her nurse made one suggestion, and that was to tie her hands down. When I asked her to repeat herself, she must have sensed I thought it was a horrible idea and started back pedaling. Needless to say, she was less than helpful. Ella uses her hands to communicate. I would never do anything to take that ability away from her.

Finally Ella gave in and went to sleep. She was snoozing for about an hour and woke up in a much better mood, thankfully. Right after nap time the NP who works with the neurologist came in to discuss what they had been observing on the EEG thus far. She explained that they are seeing spikes in the back part of her brain while she is both awake and asleep. I asked if that was causing the seizures, and she said they could definitely be contributing to the episodes she is having. We weren’t surprised when they recommended another twenty four hours on the machine for monitoring. She emphasized the importance of getting as much data as possible. I would agree, the more the better.

About an hour after she came in, Steve got a call from Ella’s doctor at Columbia. She told Steve the same thing I was told, only she painted a mental picture of what is happening. She said the spikes are like striking a match and not having it light. That keeps happening over and over again. Finally when it lights, Ella has a seizure like she did the day we brought her in. It totally made sense.

She agreed with the extra twenty four hour monitoring and wasn’t ready to even discuss treatment medications/options until she saw the full picture. So, tomorrow sometime after noon we will know everything we can about her EEG. Based on those findings, we are also hoping to have a treatment plan in place. We are getting closer.

Ella definitely wasn’t in a good mood for the remainder of my visit. I was able to feed her dinner, wash her body, and make her laugh a few times. You can tell she is totally over that hospital bed, and frankly I am too. I want to go home. I keep telling myself we are in the best place we can be to get the answers we want. I would hate to leave and have to come back because we missed something. It’s better to do it all now if Ella can hang on.

Steve and I switched back later tonight than usual so I could spend more time with her. Despite her foul mood, it was nice to get to see her for a longer period of time. I miss her like crazy but just talked to him for my final Ella update of the night. She fought hard but eventually fell asleep. Fingers crossed she doesn’t wake up in the middle of the night and hubby can get some sleep too. (Also, let’s hope for an episode to occur tonight that will provide us with more clarity.) Tomorrow could be discharge day and we all want to be well rested.

I can’t let today go by without giving a HUGE shout out to my college housemate, Danielle. After months of quarantining in her Jersey home, she stepped up (and out) to help today. She and her children were my afternoon coverage for the kids while Steve came home and rested. She KILLED IT, and ended up staying longer than anticipated. She doesn’t know it yet but she has officially made the babysitter roster. Her willingness to end quarantine for us perfectly shows the type of friendship we have. She knows I would do the same for her in a heartbeat.

It was a long day and on the ride home I needed to clear my head. A special thanks to Katy Perry for singing the oldie but goody, The One That Got Away! It was on repeat the entire ride home and I was on point with all the words. It’s nice to be able to sing in your car without having a seven year old holding his ears in the back seat.

As always, thanks for the prayers! 😘

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