Saturday, October 24, 2015

This Month's Crisis

Wednesday, October 7 started out as a normal day.  Both girls went to school in the morning, and I enjoyed my weekly massage at the chiropractor's office.  Keegan and I were anticipating a trip to California for a friend's wedding in just a couple days.  Annabelle came home from school on the bus, and I took her upstairs to put her down for her nap.  She felt warm, but I figured she was probably warm from the bus ride and I planned to check her temperature after her nap.  I put her in her crib and went downstairs to do some housework.

After less than an hour, I heard Annabelle coughing and crying on the monitor.  I was disappointed because I was hoping she would sleep longer.  I checked the monitor, and she was coughing and squirming, but I hoped she would fall back to sleep.  I continued to hear coughing and continued to check the monitor.  On my last check I saw something strange.  Annabelle looked like she was jerking rhythmically.  I thought I'd better go upstairs and check.  When I saw Annabelle in her crib, there was no doubt that something was wrong.  Her eyes were open but unseeing, her whole body was jerking, and she was gasping.  Her face was ashy gray, and there was a puddle of drool near her mouth.  I picked her up and carried her downstairs.  I took her temperature, which was 102.6, and then I called the doctor, who told me to call an ambulance.  I dialed 911 for the first time ever and tried to be calm and responsible.

The ambulance arrived quickly, along with a fire truck, and later a third vehicle.  The firemen/EMTs were so nice, competent, businesslike and calm.  They put Annabelle on a stretcher and loaded her into the ambulance, where they gave her a shot of Ativan to stop the seizure.  After what seemed like a long time to get situated, we headed off to the hospital with lights and sirens blazing.  Annabelle did not stop seizing after the first shot.  Her left arm continued to jerk.  The EMTs called the hospital for advice and then administered a second shot of Ativan.  This slowed Annabelle's breathing, so she started to receive oxygen.  When we arrived at the hospital there was a scary flurry of activity.  I didn't know that her breathing had been impacted, so it was very confusing and overwhelming to see so many serious people working on her tiny body.  During this time, Keegan arrived and we watched the chaos together.  Eventually, she stabilized, and we had a chest x-ray and CT scan done.  Both showed no major problems, but her arm did start twitching again during the CT, so more medications were administered.  We waited around for a while before being told that Annabelle would be taken by helicopter to VCU in Richmond where she could be seen by their pediatric neurology team and monitored in the Pediatric ICU.  Annabelle was born there and did her NICU stay there, so we knew we would get good care there.

I didn't want to leave Annabelle, so I volunteered to ride in the helicopter.  Keegan went home to see Sophie and collect some supplies for the hospital stay.  The helicopter ride ended up being right at sunset, and it was beautiful.  I told Keegan that we should start a helicopter tour company for the historical triangle area so that people could experience that ride without all the heartbreaking worry and anxiety that marred my trip.  I was in the front of the helicopter with the pilot, and two very competent and kind EMTs were in the back with Annabelle.  I could hear them talking on my headset, saying that Annabelle was awake, aware, and feisty, which was reassuring.

"Honey, why are you taking pictures at a time like this?"
Ok, so it is kind of a cool helicopter.
At VCU we got checked into the PICU and got Annabelle set up for an EEG to monitor her brain activity.  She was unhappy and fussy, but also very out of it from the seizures and the medications.  It was hard to see her like that.  I felt really worried and scared about both the seizures and the medications, and thoughts of lifelong distress and heartache plagued me.  I was glad when we could settle in for the night.  I fell asleep with Annabelle in her hospital crib and then took a chance to rest in a room down the hall that the Ronald McDonald House provided for families.  Keegan slept in the chair in Annabelle's room.
Snuggling helped her get to sleep.  The smiley face on her head wrap is that EEG tech's signature.

Annabelle had several more seizures overnight.  They were subclinical, meaning that they showed up in her brain activity on the EEG, but we couldn't see any symptoms in person or on the video recording.  She was put on more medications to make sure that all the seizures stopped.  The last one was recorded around 3 a.m. that first night.  We didn't see any more while she was in the hospital.  In the morning, the doctors decided to see if she would remain stable on just one medication, which turned out to be the case.
On lots of meds and feeling wonky, but willing to show off her EEG leads.
The next two days were boring hospital days.  Annabelle continued to improve, slowly coming out of her fog and beginning to smile and act more like normal.  We had to cancel our long-anticipated vacation to California, which was so disappointing.  Our situation was brightened, though, by a visit from my best friend and seizure expert Laura and her daughter Isadora.  On Friday, they moved us out of the PICU, and we spent our last night on the regular children's floor.  On Saturday morning, we were discharged at last.

Looking at a card from Sophie.
Post-EEG hair:  nothing to scoff at.  The nurse said it made her day to give Annabelle a bath.
Going forward, we are not sure what this new chapter of our lives will be like.  Because Annabelle's brain is abnormal, it is likely that the seizures are due to her brain abnormality, and not simply a febrile seizure (a type of seizure caused by fever in young children and often outgrown).  Her seizure disorder will likely be a chronic condition.  We are very hopeful that her seizures will be controlled by the one drug she is currently on, and that the side effects will be manageable.  So far, we have been home for almost two weeks.  Annabelle is tired and has some tremors, especially at night before bedtime, when she is fatigued.  She has been happy and lively, though, and so far we are cautiously optimistic.  We will see her neurologist this coming Monday and hope to learn more then.


  1. What a scary episode, Ellen! I'm so glad things have calmed down now!

  2. I have to say that I absolutely love your "why are you taking a picture at a time like this" face. I remember when Ellie was lifeflighted I told Scott to take some pictures to show our older kids because they would be furious if they found out Ellie got to ride in a helicopter and we didn't take any pictures. Hahaha - the thought process of a mom. Reading this broke my heart to know seizures are now added to the list of things you have to worry about. I'm glad to hear that treatment seems to be going well for the time being.