Tuesday, July 26, 2011

A Long Weekend

It was a long weekend around here, ya'll. Usually when people say they had a long weekend, it means they got an extra day off work and spent it doing fun stuff with their family. That was not how we spent our long weekend.

On Saturday, Brooklyn just wasn't acting right. She was irritable and spacing out a lot. She just didn't seem like she was with it. She had 4 seizures, which was the most she has ever had in one day before. She also took extra naps.

On Sunday, she starting having seizures not long after she woke up, and they continued all day long. I took her to the doctor, and they said that if they continued, she needed to be seen in the hospital. They also said that they weren't sure we could wait 3 weeks to go to CCH. We went back home, and she continued to have seizures and got sick to her stomach. I called the hospital after her eighth seizure, and they wanted us to bring her in. They admitted her immediately (and by immediately I mean the decision was made upon exam but it actually took 5 hours to get admitted because nothing is done quickly in the hospital). She had two more seizures that evening for a total of 10 in one day.

They allowed her to sleep from 1am-4am and then woke her up. They bribed her with a poptart and chocolate milk. They needed her to be sleep-deprived for her EEG.



They ran the EEG, and she earned the name "firecracker." If you aren't familiar with an EEG, they wait until you fall asleep and then they measure your head and mark it with a blue pencil. Then they put a sticky, gritty gel paste on your head and then place electrodes on the marked spots. Then they tape them in place and turn on the machine to do a 20-minute recording of the electrical activity in your brain. Well, it all went well until they turned on the machine, and Brooklyn woke up and started screaming. They tried to calm her down, entertain her, pacify her, etc, but she was fighting mad. After fighting them for nearly an hour, she got sick on them, and while it momentarily distracted them, she wiggled a hand free and jerked all of the electrodes off of her head. They had to wash her hair, let it dry, let her fall back asleep, and start all over. Luckily, the second time it went without incident. They did, however, refer to her as the firecracker from that point forward.


They then contacted experts from the Mayo Clinic and asked us if they could test her for about 80 rare metabolic disorders that seem to coincide with her symptoms. They drew blood and sent off a urine sample. We should have results in 1-2 weeks.



In the meantime, they informed us that she is just a little mystery to them, and they don't feel that their expertise is adequate to figure her out. They felt that she was stable to return home while we wait for test results and they encouraged us to continue with our plans to travel to CCH. She was overjoyed to get back in her own bed last night! We had a long weekend, ya'll.

3 comments:

Carrie said...

So glad she is okay but will be praying that you all will soon figure out what is going on! Love you all.

Meg said...

wow. Poor little thing! So scary, so exhausting. Definitely praying for you guys!

The Dickinson Diaries said...

wowza - you did have a long weekend. glad you are home now! give brookie a kiss from us. praying for you all!