Ella’s first full day as an inpatient came with some challenges, for me. Being an advocate for my children under normal circumstances isn’t always the easiest, but in times like these this mama bear is a force to be reckoned with.

Ella had a good night. After that three hour nap yesterday, she decided to stay up until three in the morning with Steve and party like a rock star. She was laughing, wiggling, and having the time of her life. I am sure she was feeling out of sorts in her new location and didn’t want to miss a thing. Ella is nosey like that. Alllllll up in the business.

Yesterday, the hospital doctor told us she couldn’t get hooked up to the EEG while she was in the ER, and we had to wait to get a room before they could monitor her. As of this morning, that wasn’t happening, and didn’t look promising for the rest of the day. Covid had limited the number of “clean” pediatric rooms, and this week alone we were told child admissions had increased.

Steve was great about giving me live updates this morning as I was waiting for our childcare to arrive for the boys. However, by the time I left to head to the hospital the only thing I knew to be one hundred percent true was that Ella ate breakfast. All the rest of the information he had been given that morning was subject to change.

Steve told me he met Ella’s new nurse and on my way to the hospital called me for one last surprising update before I arrived. Ella was in the process of getting hooked up to the EEG and was loving every second of it. That sounded promising. When I got to the hospital, I checked in with the lobby nurse, updated my new security guard friend, Tom on Ella’s status, and went in to see my baby girl. For all those wondering, Steve and I did exchange a few words and smooches as we passed each other in the parking lot.

Ella was so happy to see me. We laughed and talked about her night and time with daddy. She seemed to be refreshed and full of energy. Her little onion cap, as Dani is calling it, wasn’t bothering her too much and her IV was still intact. All positives. As I sat there, waiting for her nurse, I did have a few questions.

For one, why suddenly, twenty fours hours later, was it okay to have her EEG hooked up in the ER? We had been asking all day yesterday and they held strong with the reasoning that we needed a room first. Second, why after she woke up this morning and peed herself did you only change her clothes? She still smelled like urine. I know Steve mentioned that a few times before he left. Finally, why did she only get a banana, applesauce, and a ER turkey sandwich last night for dinner when I asked at two o’clock for her diet to be put in the computer? Typically she doesn’t do well with cold cuts. She has a thing about food textures.

Ella’s nurse finally came in and I asked her if she could get me a supervisor to talk to. Minutes later, Andrew shows up. Andrew must have seen in my eyes that I wasn’t messing around and let me vent. When I was done he completely agreed I had every right to be questioning what had happened. He told me the EEG was being done by an outside company that doesn’t usually send people to the ER. He suspected they decided they weren’t coming during the day in hopes that we would get a room by nightfall and they could hook her up there. He apologized that no one cleaned Ella and promised to get a tech right away. He blamed the food confusion on the doctor forgetting to put the order in and he took it one step further promising to check on the status of Ella’s room, which I never even asked about. I like Andrew. He seemed very proactive. I have a soft spot for people who know how to do their job. He also told me that he called the EEG company himself this morning after seeing how long Ella had been waiting. He told them they needed to get their butts to the ER to hook Ella up.

After about thirty minutes passed and no one came to clean Ella, I wondered if Andrew might have been fibbing to me? I walked in the hallway to find him walking by. We exchanged glances, which must triggered his memory, and moments later Ella was being cleaned. It shouldn’t have to be like that. Do what you say. Say what you mean. I still like Andrew though. We all make mistakes.

Her nurse didn’t impress me today and was less than attentive. She barely came in, and most of the time was no where to be found. Ella must have sensed my frustration with her lack of care because at some point she just started pulling her wires out and setting the machine off. Each time it happens the nurse would come in. When the nurse arrived, like clockwork, Ella cracked up. This went on for a good ten minutes. It was a game to her and she was loving every second. I knew it couldn’t go on all day so I moved the wires where she couldn’t reach them. It was fun to watch for awhile.

After that a nurse practitioner who worked with the neurologist came in and we went over Ella’s medical history. She said her episode sounded like a seizure, and tomorrow they will begin to take some information from the EEG and let us know what they see. She also said it was likely Ella would be hooked up for forty eight hours, instead of the originally discussed twenty four. They didn’t want to take the chance they missed anything. Tomorrow they should have something to share with us regarding her brain activity.

As the day went on Ella’s nurse got a little better. However, I must say I was most impressed with her tech, Yvonne. Ella adored her. She spoke so softly to her, told her what she was doing before she did it, and got us anything we needed. Every time she came in the room, Ella would reach her hand out for her. It was the cutest thing.

We think Ella did have one small episode today. Otherwise, she was enjoying the around the clock attention and laughing and moving the day away. Before I left she was starting to pull on her onion cap and I could tell was getting super cranky. She had been a champion the entire day. It was time for her to rest.

Steve clocked back in, fed Ella dinner, and she fell asleep. It wasn’t too long after that they told him they had a room for her and transferred her to the floor. Steve said they have been amazing up there so far but Ella’s awake now. We are praying she falls asleep soon because brain activity while she is sleeping is what they want to see the most.

On the ride home, Ella’s Columbia neurologist reached out to me to confirm she would call tomorrow to discuss any findings. They have a team of three specialists trying to solve the mystery that is Ella. We are grateful for a fresh set of eyes.

Until then, thank you for all the texts, calls, and emails. Ella’s doing great, which is a blessing and a curse. We obviously want her to not have these seizures, but if she doesn’t have one while she is hooked up, then it could be harder to treat.

Keep those prayers coming!

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