Brooklyn's Hospitalization

Many of you have asked about the details of Brooklyn's most recent hospitalization. Some of it is a bit of a blur for me, but I will try to journal what I can recall. Basically, Brooklyn presents a very challenging little medical case. The best guess that we have as to why she got so sick was that her body had just gotten her seizures under control and then she got a virus, and it lowered her seizure threshhold. Her little system couldn't handle fighting germs and seizures at the same time!

On Saturday, September 17, Brooklyn slept until after 9am. When she eventually woke up, her nose was gross and her lips were cracked and bleeding, presumably from breathing out of her mouth all night. I called the pediatrician and made a sick appointment. While we were waiting on her appointment, she had her first seizure in two weeks. It was about 30 seconds long. She also refused to eat breakfast. When we saw the pediatrician on call, he said he thought she had a virus, but that he was going to go ahead and give her an antibiotic just in case because he didn't want to risk her having more seizures.

She continued to have several more seizures throughout the day, and around 1pm she started to act strange. She still refused to eat, and she started walking sideways and dragging her left leg. I called the emergency neurologist at Cincinnati, and he said to go ahead and give her another dose of her anticonvulsant, and if she had another seizure after that, I needed to administer her injection and call an ambulance. The reason for the ambulance was that she had never before had that particular injection, and a common side effect can be difficulty breathing. Since they didn't know how she would handle it, precautions needed to be taken.

I was really nervous about that part. I usually handle Brooklyn's challenges fairly well, but I was a mess. I knew I needed to stop her seizures, but I was so scared that she would stop breathing and it would be a result of something I had done, and I wasn't sure I could handle that. She had another seizure, but I decided to wait just a little bit longer because I was so scared. Then she had another within five minutes. So, I called 911. The dispatcher told me that the rescue squad was on their way, and encouraged me to go ahead and follow the directions from the doctors. I did, and Brooklyn took it like a champ. Her seizures immediately stopped and her body relaxed. She laid very still on the couch and I carefully watched her breathing. And then she started laughing. The emergency room doctors later informed me that the injection hits the same receptor as alcohol, which explained her reaction.

In the meantime, I explained to Savannah that some doctors were coming to take Brooklyn to the hospital to help her. She informed me that it was fine as long as the doctors didn't take her by mistake. Then she ran and hid in her room.

The rescue squad arrived shortly and hooked Brooklyn up to a heart monitor and pulse ox, and strapped her to a child's stretcher. We began our bumpy ride to the hospital.

My mom came and followed us in her car with Savannah in the meantime. Darren was at work.

We spent the afternoon in the emergency room, where Brooklyn's seizures started back up again. They gave her several more doses of antivconvulsants (more than twice what she usually got at home) and drew some blood to make sure her levels weren't toxic. Brooklyn continued to refuse food, and then she threw up. They decided to start an IV and admit her overnight for observation.

Sunday morning looked better, but throughout the day she grew worse and continued to have seizures. She had 4 that day. She smelled like medicine and continued to refuse food and drink as well. They started IV fluids to keep her from getting dehydrated, and decided to keep her overnight again since she hadn't improved.

Darren worked Sunday also, but then was off during the week. He held down the fort with Savannah and did preschool carpool, school pictures, lunch bunch, show and tell, etc. He referred to himself as on "super dad duty." He did a good job!

On Monday, they called Cincinnati to consult with the neurologists. That was her worst day. She was barely awake all day. She laid in the bed, limp and lethargic. At one point, a team of seven doctors came in the room and she did not wake up throughout the exam, even with them shining a flashlight in her eyes. She continued to refuse to eat and drink. She had 5 seizures. They did an EEG to make sure she didn't have any ongoing electrical activity in her brain, but it was normal. That evening, they decided to try and give her a new anticonvulsant along with the other one to stop her seizures. However, she had a rare hyperactive reaction to the medicine and began to scream and then laugh hysterically. She also tried to jump out of the bed and hit her head against the rails, all while laughing. She didn't fall asleep until 1 am, after pulling her IV out. We told them at that point that medicine couldn't be given to her again. They agreed, and said they would probably transfer her to Cincinnati the next day.

Tuesday came and there was talk of a transfer, but it would have to be done by helicopter and it would be both costly and complicated. It was hard to justify since her vitals were stable and she wasn't considered critical. She had 6 seizures that day, however. So, after much debate, the doctors decided to consult with the doctors in Cincinnati and carry out their orders at our hospital. The decision was made to place her IV back in her arm and start high doses of the IV anticonvulsant that she had seemed to tolerate well. They warned us that it would probably down out her appetite again but it should last less than 24 hours. They started the IV dosage at about 6pm, and the evening was rough but things leveled out pretty quickly after that.

The doctors were really hopeful that Brooklyn could go home on Wednesday when she ate a granola bar for breakfast, but her stomach wasn't quite ready. She threw up and only had two wet diapers and refused any fluids by mouth. They gave us two bags of fluids through her IV. She only had one seizure, however. Late that evening, she ate a few bites of mashed potatoes and then went to sleep.

On Thursday, Brooklyn woke up acting much like her normal little self. She drank an entire carton of chocolate milk and ate a poptart and a few bites of banana. They discontinued the IV and she continued to do well and remain seizure-free, so we left the hospital at lunch time to come home after almost a week! What a long week it was!

We are very thankful for the great team of pediatricians at the hospital who really put in overtime to make sure that Brooklyn was well taken care of. We are also thankful for the rescue squad workers who were great with her. And of course for our wonderful friends who kept Momma supplied constantly with coffee and food, and brought more casseroles than we can possibly eat to our house upon our homecoming! Brooklyn sure is loved, and we couldn't handle this journey without you all!