The last few nights I have been having trouble sleeping. I wonder why? Last night, I made an effort to go to bed earlier in hopes that I would wake up refreshed today. Jack was totally on board with helping, and woke up at 8:30 am, instead of his normal 6:30 am. Gibbs had other plans for me. At 4:30 am he began whining so loud that he woke me up. A little love was all he needed to get back to bed, but waking up put a dent in my sleep pattern.

Despite my little blip in sleep, I felt great when I woke up. I was optimistic about Ella and it felt as though a little weigh had been lifted off my shoulders. I checked in with Steve immediately and he told me that Ella had a good night, but woke up a little cranky. As we were speaking he was feeding her breakfast and she seemed to be calming down. He reported no new episodes throughout the night.

We were kind of in limbo on discharge and treatment options until the forty eight hour EEG clock expired, so I spent some extra time with the boys before I headed to the hospital. It was nice to see them laughing and playing. I really took time to appreciate the little moments this morning. It’s easy to get wrapped up in what’s going on with Ella and it is important to be there for them too.

The hospital shuffle happened around 1:30 pm today. Steve was exhausted when I arrived and Ella wasn’t in the greatest mood. I got to her room and sat down to talk to her. She was whining and grabbing my face with the saddest look in her eyes. I knew at that moment there was no way she could last another night with the monitor on. I called Steve to share my thoughts with him. We were in total agreement.

I worked extra hard to keep Ella busy so she wouldn’t completely lose it. Around 2:30 pm the NP came in, just as Ella was falling asleep, to update me on the results of the EEG. I called Steve so he could listen in and hear what she had to say. She explained that they were still seeing activity in the back portion of her brain, on both sides. It was happening both day and night, but during the last twenty four hours it had become less frequent than the first twenty four. I asked if there were any major spikes, and she told me no. At that moment I felt both saddness and joy. I so wanted them to get an episode recorded so we could confirm she was having seizures.

Due to the fact that there were no huge spikes, seizure was not a word they were willing to commit to using when talking about a diagnosis for Ella. The NP told me that she had consulted with our neurologist at Columbia and they agreed the best course of action was to put Ella on Keppra, to control the abnormal activity she was having. They said it would also calm her, even though it was a small dose. We reviewed side effects and discussed some concerns we were having. Before we committed to anything, we wanted to talk to Dr. Bain at Columbia.

Steve called and spoke with her. She went over the results with him again and confirmed the recommendation of medication. She was very clear that it was our decision to make, and we alone had to be comfortable with it. She did say that if it were her daughter, she would choose the medication. The episodes Ella is having are painful to watch. Starting her on the Keppra makes the most sense.

With the decision being made, we were free to be discharged and go home. It was suggested we start the medication tonight since it is two doses every twelve hours. Starting mid-day would mean we would have to wake up early morning to give it to her. That didn’t seem like such a good idea. Sleep is already lacking in our house.

I was given an estimated discharge time and called Steve with the good news and updates timeline. Ella was then unhooked from the machine, flipping out the entire time. There were some real tears too. I had not seen those the entire stay. Despite the EEG techs constant apologies, Ella just wasn’t feeling it. I suspect it was because they were pulling probes that were attached to glue out of her hair.

She smelled awful from all the sweat and urine on her body over the last few days. I asked for a basin and washed everything, including her hair. I wasn’t going to bring her home a hot mess. The second I put street clothes on and washed her hair, she was a completely different child. I got into bed with her as we waited for her prescriptions to come before we could leave. Some last minute selfies and we were good to go.

Ella’s nurse got us a wheelchair, and shockingly I ran into another nurse from the floor I knew. She happily assisted in bringing our stuff down to the car while we played catch up on our short trip out. She’s the sweetest. We met Steve at the main entrance door. Ella and I were both thrilled to see CJ had made the journey to see his little sister. He has been missing her like crazy.

Ella fell asleep seconds after we left the hospital. I know she knew she was safe and happy to be heading home. My mil was here with Jack and her reunion with Ella was the cutest. They spent some time hanging out on the couch before she sat down for dinner. You could definitely tell Ella was happy to be back in her natural environment.

Then it happened. As she was sitting on mil’s lap, she had an episode. It was just our luck that after three days at the hospital being monitored, she would have one within a half hour of us being home. It was short but her eyes did roll back and she was semi unresponsive. She came back quickly.

Once she was fully alert, my mil began to feed her dinner. Twice in her high chair she had an episode. In an effort to prevent another one, and thinking it might be related to her body position, my mil moved her back to the couch. That is where she had her fourth episode. Again it was short, but an episode nonetheless. It was after these episodes that we gave her the medication.

It was clear Ella was tired so my mil brought her up to bed. The thought was that she could relax and get settled before she fell asleep. In her bed is where she had her fifth, and final episode. It wasn’t long after that she fell asleep. I am sure she was exhausted from her hospital stay, the new medication, and her five episodes.

Steve and I agreed five episodes in such a short period of time was alarming, especially since Ella had gone three days with zero. We called Dr. Bain to get her thoughts. She could offer no explanation as to why it was happening, but assured us the medicine would take affect soon. We just needed to hang on a little bit longer. Dr. Bain advised us to manage the episodes at home, and made it clear we should call 911 if Ella had another episode like the one that landed her in the ambulance earlier this week.

CJ was present for all five episodes and is having a hard time processing them. He was worried each time Ella wouldn’t snap out of it, and each time he called her name to try and get her back. He has been amazing in regards to all things Ella this week, and he has told me multiple times that he wants her to get better.

Ella’s stay at the hospital did not quite give us the type of answers we wanted. We knew she was having episodes but were searching for the reason why? For now we will wait and see how the medicine works before we decide if we are going to take this any further.

What a rollercoaster of emotions today was. Steve and I are both mentally and physically exhausted. In a way I almost feel like we are further from answers than we were this morning. I am grateful we are home, but know I will be up all night checking on baby girl.

Today we didn’t get a diagnosis. We got confirmation of something we already knew. I don’t know how to process that just yet. The search for answers continues and hopefully very very soon these episodes cease to exist. What I do know to be one hundred percent true after today is that Ella is a rockstar. I will forever be in awe of her strength.

Thank you to everyone that reached out today! It was a tough one. Love you all! ❤️

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