Joe's Hospital Stay

Last Wednesday was one of the scariest days of my life.

That is when Joe's seizures began.

Those days in the hospital seem like a dream. Everything is fine now, but sometimes I find myself breaking down in tears thinking about some of the events of the past week.

This is what happened.

Last Wednesday was just a normal day. Joe and Sam were being well behaved. We watched our Daniel Tiger and ate breakfast. Joe made the Sign of the Cross while on the potty. Normal (for us) stuff. We have a tiny little step-stool chair that was right against the bottom of the couch. Joe was sitting in it and out of the corner of my eye I saw his arms fly out, and he made a little noise, almost like something startled him. I looked over at him and he was fine. I figured since I didn't fully see it that he was just being a hyper 3 year old.

About an hour later he was standing on a child's chair at the kitchen sink. I turned my back for one second and when I was turning back around I saw him flying backwards. His arms were flung foward. He landed on his back but seemed fine. I was concerned... I felt like something wasn't right, but again, I saw this fall out of the corner of my eye, so I figured maybe he took a step and lost his balance and fell.

I picked him up and sat him in his booster seat at the kitchen table. I turned around and even though I didn't see anything, I heard his little grunt noise again. It sounded like a cross between getting punched in the gut and being surprised. I had heard this noise maybe once or twice in the last two weeks, accompiannied by seeing him have these little spasms... but they were ALWAYS out of the corner of my eye. I bent down to look at Joe. He seemed fine. I asked him if he was OK and all he wanted was his mac and cheese.

Something wasn't right. My mommy senses were tingling. I knew something was off. But my pediatrician doesn't work on Wednesdays and I wanted him to see Joe, not a substitute doctor. I decided I would wait until Thursday to call. I consulted Dr. Google about seizures, but as soon as I read some of the stuff I freaked and closed the computer. I checked his temperature to see if he was possibly having febrile seizures. His temp was normal. I was confused because these weren't the "normal" seizures that I've seen on TV. These were just a few seconds. 

Since Joe was having these spasms and had already fallen off a chair I decided to put on some movies for him so he could sit and relax. I watched him on the couch and for the first time I saw it. It was 2 seconds. His arms flailed out, he made his gasp/grunt noise... and his eyes rolled back into his head. I knew then that something was SERIOUSLY wrong. I was kind of hoping that he was just messing around before, but it was apparent that he was not.

I immediately called Ryan in tears. "Please don't freak out, " I ordered him in between sobs, "but I think Joe is having small seizures." Of course he freaked out. I heard him run out the door and yell to someone, "I have to leave." He called me when he was on his way home and told me to call the pediatrician. I told him I couldn't because I was crying so hard. He asked how Joe was doing. The weird thing was that after these episodes, he was acting totally normal. It was kind of like a DVD skpping for a split second and then resuming play. But as I was talking to Ryan, he seized again. I didn't care what anyone said, I was going to take him to the E.R.

Ryan got home and the first thing Joe did was take his battery-operated ghost light and ask Ryan for new batteries. Ryan had called the pediatrician's office while driving home, but they hadn't called back. I told him to call them again and tell them we didn't know if this was an emergency since Joe was acting normal. They told us to take him to Children's Mercy Hospital right away.

We gathered up some stuff. Joe was walking toward me when all of a sudden it looked like he was possessed. His knees jerked to the left while the rest of his body jerked right and he fell to the floor. He laid there and started to whimper. He knew that something scary had just happened. I scooped him up and we rushed out the door. As we were walking to the van he had another spasm in my arms.

We weren't sure if we should go to the hospital that was closest to us or go to Children's Mercy. We decided that Children's Mercy would be better. We had just been there a couple of weeks prior for Sam's surgery, and Joe loves the "hopittle." In fact when I told him before Ryan got home that we might go to the hospital he started begging to go.

I kept Joe awake while we were driving and recorded him to capture if he had any more spams. He was tired, but remained awake, but with no episodes. We finally got to the E.R. and waited. And waited. And waited. A woman there with her daughter said they had been there for two hours. That didn't alarm me until he started having them in the E.R. That didn't make them pick up the pace quicker, but seeing Joe go back to coloring and walking around the animal-themed E.R. probably didn't help his case! I hovered over him everywhere he went incase he fell down. We called our moms. My mom told me she was on her way from my hometown which was 2 hours away. Ryan's mom was there in like 2 seconds to take care of Sam. My mother in law saw first hand his episodes and I saw the concern in her eyes.

Finally... FINALLY we got into an E.R. room. Right after the nurse left he had another one, so we started keeping track of how often they occured. We spent a few more hours in the E.R. A resident came in and assessed him and witnessed one herself. She started talking about the fact that he used to have reflux as a baby might be causing these spasms in his esophagus and that could be the reason for his episodes. They were going to run some labs and a CT to be sure. When she left I looked at Ryan and said, "This is NOT because of reflux." I don't like it when people have an "I know better than a doctor" attitude, but I just knew this was something in his brain. We caught another episode on Ryan's iPhone. The attending physician came in and he had another big, powerful spasm. It knocked him on his back, so thankfully he was sitting on the bed. He said, "Whoah!" afterward. These spasms were getting stronger, still very brief but it was overcoming him. It was scaring the ever living crap out of me.

The medical staff took a urine sample via catheter (which made the rest of our stay miserable because he wouldn't go to the bathroom the rest of the time there because it stung so bad) and took blood. It was amazing because he didn't scream or cry at all when they took blood and inserted an IV port. I think he was more curious than anything.We took him to get his CT scan and he did NOT like that at all. It was hard to get him to lay still.

A neurology resident came in. He was writing something down when he missed an episode, but they were coming so close together that he witnessed two others for himself. That's when he mentioned myoclonic seizures... short, brief spasms where the arms shoot out. He was definitely going to be admitted.

My mom and mother in law were there keeping us company. Nurses, admissions officers and doctors/residents were coming and going. Joe had requested a picture of a jungle to color and a very nice woman from child life services came in and gave him one and some cars for him and Sam to play with. We spent the rest of the time waiting for a room. He was having these seizures every hour... sometimes only 10 minutes in between. The attending doctor came in and told us there was an abnormality seen on the CT, but that could possibly be from him moving. They were going to do an MRI the next day.

I was scared, tired and confused. Joe never gets sick. He never saw his pediatrician between his 2 year and 3 year well-child check ups. He is always so spunky and full of life. What the heck was causing this?

I felt so completely helpless.

It was around 8:30-9:00 p.m. before we were moved up to a real room. Ryan had gone home to get some stuff and some dinner. My mom stayed with me to help care for Sam. She left soon after Ryan came back. We settled into our room. I snuggled with my baby boy on the bed. His last episode was at 10:00. He was wired so he kept whispering stuff and playing with my hair. It was around 11:00 when he finally drifted to sleep. I cried and cried and cried and hugged my Joe. You'd think that the day's events would have worn me out, but I got about one hour of sleep. I should have gotten more rest because the next day was even worse...

More later.. 

Showing off his IV port in the E.R.