EMU

When Lydie started having seizures again at Christmas, we had to reevaluate things with her neurologist, Dr. B (our absolute favorite doctor). We felt very blessed that we were able to adjust her current seizure med and add an additional seizure med (without side effects) and Lydie’s seizure’s seemed under control again.

We met with Dr B. again in March and he was so pleasantly surprised with how well she was doing. But he felt like it was best to do another overnight EEG to make sure that she wasn’t having seizures at night that we just weren’t seeing. So we got something on the schedule and the time finally came this last week.

Scheduling Mishap?

Lydie was scheduled to be admitted to our local children’s hospital at 11:00 AM on a Wednesday. During the night between Monday and Tuesday, Lydie woke up several times and threw up. It was a long night for both of us, between multiple baths to clean her up, changing sheets and doing laundry, and trying to calm down sad feelings.

Tuesday, Lydie was off the entire day. I held her most of the day and she would wake up for maybe five or ten minutes (really agitated) and then would fall back asleep for 45 minutes to an hour – and repeat that process all day long. It was looking very similar to Christmas and I was worried that her seizures had returned.

On the one hand I thought that maybe her hospital visit was perfect timing since the purpose was to monitor her seizures but I was also worried about bringing her when she could possibly be sick (even though I am pretty confident her throwing up was due to the seizures).

So I made the difficult decision to call and reschedule. I was trying to make a kind choice (because, believe me, I did not want to wait several more months to get in for this visit!) and delay this to avoid spreading possible sickness. When I called to reschedule I had an extremely negative interaction with someone. It was not good. To sum it up, she told me Lydie had no appointment with the EMU, there were no orders for an appointment, and she wouldn’t transfer me to anyone else because, in her opinion, there was no need. Uggg…it was not pleasant. I wish I was better about not letting those things bother me but I felt yucky about it the whole rest of the day. So at that point, I knew nothing was cancelled and there was ten percent of me that was questioning if I had completely lost my mind and had no appointment to begin with.

I went to bed that night worried about Lydie and unsure about what the next day would bring and didn’t know what I was going to do.

We DID have an appointment

I woke up early the next morning and checked on Lydie and she was completely back to her old self. Despite sleeping almost the entire day before, she had slept through the whole night and looked happy and healthy. I decided that I was going to continue forward and do her appointment. I packed our bags and equipment and we made our way down to Denver.

The more we drove down the more I did worry about the possibility of her not having an appointment. But we arrived and got checked in without any problems! Yay! I am choosing to view that negative interaction as a little tender mercy because Lydie seemed well and I would have been kicking myself if I had cancelled with how well she was doing that day.

Mishap after Mishap

While we had no problem checking in, our room was not ready yet. We had to sit in the in hospital lobby for over an hour while we waited. Lydie is extraordinarily patient. She was doing so good and I really didn’t mind it too much either until about the 45 minute mark. Lydie was getting hungry and no one was communicating anything to us.

But our room was finally ready and we got settled in. We had the parade of providers and other hospital staff when we were initially admitted and then we got into our routine.

If you’ve spent any time in the hopsital, you can probably relate that there isn’t much relaxing about it. It’s boring and yet constantly interrupted. Even after we had gone over Lydie’s medications and timing of that medication we were waiting over an hour for her afternoon meds. Then when the nurse went to give them to her, she ended up spraying half the med all over Lydie and me (she had a mishap with the G-tube). So then we were unsure about how much of the med she actually got (which was a seizure medication).

We got Lydie and I cleaned up and then the nurse decided that since we were unsure about the medication and since it was late that they were going to wait to give her her night medication and that her labs would also have to be delayed. I know this shouldn’t be a big deal but Lydie was so tired. Because of the lateness of her afternoon med, she only got about a twenty minute afternoon nap and then I had to keep her up an extra hour past her normal bedtime. The poor thing was so tired.

A+ Night

The night was easily our best hospital night Lydie has ever had. Lydie slept the entire night! She did get up around 5:00 AM and I tried to get her to go back to sleep but by 5:30 a technician from the lab was there to take blood. So we were up after that!

Everything else after that went well though. Our new nurse that morning was a nurse we had had before that was so sweet with Lydie. By 8:30 they had come and taken off her EEG. Almost immediately the EMU providers came in (whom we have met and interacted with before). They said that we were good to be discharged. I hurried and got our room all packed up again and Lydie changed because it felt like we are moving right along. Silly me. I should have known better and it was another two hours before we were officially discharged and on our way home. But we were happy to be on our way!

By the time we had come home and I was feeding Lydie her lunch, we made another sad discovery. What I thought was leftover goo on Lydie’s temples was in fact a giant blister! I am still completely baffled what happened with her EEG but I felt so bad for our little girl.

Conclusion

Lydie didn’t have any seizures during her EEG. While that is happy, we feel very certain that they were happening that week. In fact, the two days Lydie spent in the hospital were definitely her best days of the week (more on that later). But the EEG was still considered abnormal (which is normal for Lydia) and said she was at an increased risk from multiple regions of the brain, but greater in the left temporal region.

Her ESES (or Penelope Syndrome) is still not good. In fact, it rose to having “spike-waves” 97% of the time during her sleep (before she was at 94%). This is not something we are actively trying to change mostly because it is out of our control. But it is sad to see that things are not improving in any way.

Her labwork did come back good though and we are grateful for that!

We left town right after her visit so we haven’t spoken to her neurologist yet (just looked at her chart and read his findings), to know if there will be any changes with what we have seen at home. Will keep you updated (probably in our June journal).