Just Another Day with Hydrocephalus

This morning, Emma and I got an early start to her day. We were both up, dressed, and ready to leave the house by 6:15 AM so that we could get to Children's in Dallas by 7:00 AM. Her schedule for the day was as follows:

• 7:30 AM - check in for MRI
• 8:00 AM - MRI (annual check of her ventricles and shunt to make sure everything looks good)
• 10:00 AM - EEG (test to see if she is still at an increased risk for seizures)
• 11:00 AM - appointment with her Pediatric Neurosurgeon to review her MRI

We didn't have to be there until 7:30 AM, but I always prefer to be early. Plus, Emma gets her morning dose of Keppra at 7:00 AM so I like not having to worry about doing that during our drive in.

After she had her medicine and was all set in her stroller, we headed to check in for her MRI. The plan was for her to get to eat her breakfast while we waited for her MRI at 8:00 AM. But since we were there early and they were ready for us, we did her MRI first and were done by 8:00 AM. She was wonderful as always and the staff was so impressed they gave her a gift basket! Then it was time for breakfast since we had a couple hours before her EEG. We still wanted to get there early just in case they could get her started sooner because the EEG was an hour long test this time and we had an appointment that was scheduled directly after that was in a different part of the hospital. Thankfully, they were able to get her started early so she was finished with just over 10 minutes before her next appointment. Again, the lady administering the test was so taken by how good Emma did that she gave her a little backpack full of toys! I think she felt bad for giving her such an impressive hair style...

When we saw her neurosurgeon, it was more good news- her ventricles looked great! They were slightly smaller, if anything, than they were from her last check. He was astounded by all of the development she has had in the last year since he saw her last and beyond thrilled at how much music had impacted her life. He said if she continues to do as well as she has been, we will start to go to check ups every other year after our next annual check when she is five years old. This was music to my ears!

What a Weekend...

While I am still trying to absorb all of what has happened in the last forty-eight hours, I'll do my best to summarize. Friday night, Emma was picked up by my ex at 6:00 PM for his weekend visitation. At some point during his drive back to his apartment, she started coughing and gagging as if she might vomit. He texted me asking if she had been acting any different that day, but I told him she hadn't. Then he called around 6:30 to tell me what was going on and I told him to call Acute Kids or take her to an ER. He got off the phone with me and called Acute Kids.

Just over an hour later, he called me back to tell me that Acute Kids told him to take her to the ER, so he was taking her to Baylor in Grapevine. He texted me again to tell me they were going to transfer Emma to Children's Hospital. I asked him if she was having a shunt malfunction and if they had told him what was wrong and he responded they didn't know, but it looked like she had a seizure. Since Emma never had a seizure before, I immediately felt like the floor below me disappeared and the room went dark. I quickly texted back asking if she was stable and he stated she was, and that they had given her anti-seizure medication. At that point, I turned around and went straight to Children's. I beat her there and had to wait. It felt like hours passed before I finally saw her being rolled into her room on the hospital bed knocked out and looking so weak. My heart dropped and it took all my strength not to cry, but I kept composed and just spoke to her and rubbed her hair out of her face until I could hold her.



The doctors at Children's had lots of questions about what had happened that led up to the ER and after. I looked at my ex and said she was with him so he'd have to answer their questions. I hated that I wasn't there for her and didn't know what had happened so I listened as intently as I could so I could understand what she had been through. This was the first time I heard the full story of what happened, and as the words came out of his mouth, I felt weak and strong simultaneously; weak because of feeling like I should have been there to comfort her, and strong because I knew she needed me to be strong for her.

He described how she had coughed and gagged in her car seat on the way to his apartment. He stopped on the side of the road to get her out and she was a limp noodle. He put her back in the car seat and went to his apartment. When he arrived, he placed her on his floor on her side in case she needed to vomit. Her left arm began to move rhythmically and then her left leg did as well. Her eyebrows started twitching, her face grew pale, and her lips turned blue. Then he took her to the ER. The Children's doctors then asked how long the rhythmic movement had been going on before they gave her the anti-seizure medication at the ER. He said he couldn't be sure, but he estimated it to be twenty to twenty-five minutes. He said they did a CT scan on her and took blood. I was shocked by his story as I hadn't heard any of it except what happened in the car ride to his apartment. I was frustrated he hadn't kept me well informed considering he had two hours from when he arrived at the ER to when she left to be transferred to Children's.

Around 11:30, the resident on Emma's case said the neurologist had reviewed CT scan from Baylor and said her ventricles in her brain actually looked smaller than they did compared to her MRI she had back in March, so he felt she was not having a shunt malfunction. This was a huge relief, but it also meant we weren't certain what caused the seizure in the first place. To try to figure out more about her seizure, the neurologist ordered an electroencephalogram (EEG) to analyze her brain waves. The resident did say that they usually don't perform those tests on the weekends unless it is an emergency, but maybe we'd get lucky.

My ex decided he was going to go down to the cafeteria for some food and offered to bring me back something just after midnight. After he brought back a sandwich, he told me he was going home for the night because the room was too small. I was disappointed in him again for not staying for her, but not surprised.

Fast forward through the night and the morning and we finally heard the magic words, "we are going to do her EEG now." Only one parent could go with her and my ex said I should go. So Emma and I left around 11:45 AM for her first adventure away from her room. We got to the test room and the technician got her ready by making marks all over her scalp where the little electrodes would be placed. Once she was ready, the test lasted forty-one minutes. She slept for the first part, but then the tech said she would need to be awake and interacting for the second half. She didn't really want to wake up, but thankfully she obliged. She slept through the clean up and the whole way back to her room.

We tried off an on to see if she was ready to drink some milk and finally she did around 3:00. She drank about five and a half ounces before the neurologist came in and wanted to check her over. So we had to stop her even though it was the first thing she'd had since she left my house around twenty-one hours prior. He stated he felt she had epilepsy and would be placed on a daily medication, but he didn't know which one and wouldn't until after he reviewed EEG which should be around 4:30. So it was time to hurry up and wait.

When 4:30 came and went, I began to get antsy. I knew my dogs would be needing to go out soon but didn't want to miss the doctor reviewing the results. Finally at 5:45, I spoke to the resident and asked if she had anyway of knowing where on the list Emma was for the neurologist. She assured me that since he was so busy (with over thirty patients), I had a couple hours at least before he would review the EEG results and talk to us about them. So I went home and grabbed stuff in case I'd be staying another night if she wasn't released.

At 6:15, my ex texted that neurologist called the nurse with the EEG results. He felt Emma was at more risk for future seizures than an average child and would need anti-seizure medication daily. I was back at the hospital by 7:00 and hopeful she'd be leaving soon. By 8:00, she was being discharged and it was time to review paperwork and learn about her new medications. About an hour later, I put her in the car seat of my ex's car and kissed her goodbye. It killed me that she wasn't going home with me, but I knew she'd be home with me again in just twenty-one more hours. Since I still couldn't sleep, those twenty-one hours felt almost as long as the last twenty-four at Children's.

But, I'm happy to say she's home now. She finally ate for the first time since lunch on Friday with me and drank all her milk as well. I'm so proud of her for handling this weekend so well. Now it's time for me to try to sleep for the first time since Thursday night.