So I guess Grayson thought it was lame that we had no Friday plans and decided to mix things up.
We got home from school yesterday and I put him in his excersaucer and turned on his music. A few minutes later, he was slumped over and zoned out. I thought he was just exhausted from his day and took his picture, actually planning to post it on Facebook.
I did a few things around the house, and when I went back in to check on him, his head was buried in the excersaucer and he was making a noise- I thought he had fallen asleep and was snoring. I went to take another picture and realized he was seizing. This seizure was unlike any he’s had before- it was more like the “Hollywood” version- convulsing, foaming at the mouth, non responsive, and wet, clammy skin.
By the time the ambulance got here, the first seizure had ended, I put him in his swing, but a few minutes later a second one began. The paramedics laid him on his side on the floor, put an oxygen mask on him and he immediately started vomiting everywhere. They had me administer his emergency rectal gel that we have on hand for seizures lasting more than 5 minutes (we’ve never had to use it before).
The ambulance rushed us to the hospital with sirens and lights, and fortunately, he was stabilized by the time we got there. Ryan met us there, along with his mom, sister and niece. My amazing friend J brought diapers and snacks, because I was so frazzled when we left the house that I forgot to grab the diaper bag. Ryan’s sister went and got me dinner, and we waited. They put in an IV and took blood, and Grayson didn’t cry at all- he was so out of it. He had a CAT scan that came back abnormal- they compared it to the last CAT scan he had a year ago, the night of his first seizure. The two scan scans were very different- not good.
Because of the nature of the seizures, the CAT scan, and Grayson’s Mitochondrial disease, we were transferred downtown by ambulance a few hours later. My brother and his wife met us at that hospital. By the time we got to sleep, I had told his entire medical history (not just what happened yesterday) 4 times. Seriously, why can’t these interns, residents and attendings just talk to each other? It’s so annoying.
|I love how the transfer nurse wrote the name of G’s seizure med on his hand- ha!|
We were told we would see neurology first thing in the morning and to expect that they would order and EEG and possibly an MRI. Remember Grayson just had an EEG on Wednesday? And he HATES them? So we both went to sleep- G in the cage-like hospital crib and me on the oh-so-comfy “couch”- way less fun when you’re pregnant, let me tell ya.
They were right- a neurology intern came in about 7:15 am- waking G and I up. I won’t complain though, because this was way better than waiting for hours to see a doctor. About 30 minutes later, the entire team came in. The attending neurologist was great- listened carefully to me and answered all my questions. Since we really haven’t ever had Grayson’s MRI results from May discussed with us by a doctor (because our doctor has been on maternity leave), he pulled up the scans on the computer and gave us a detailed explanation. He was also teaching the med students who were with him, so it was a whole “lesson” on our little dude’s brain.
Grayson’s brain is not normal. The doctor explained that due to the abnormalities, his epilepsy is not surprising and expected. He has a very thin corpus collosum, and white matter volume loss. He pointed out on the scans large black areas that should be white. He doesn’t have nearly enough white matter in his brain that would be appropriate for his age. This is why G cannot sit up, crawl, walk, or talk. His brain doesn’t allow his body to do those things. We don’t know whether or not this will get better, stay the same, or get worse.
The doctor surprisingly did not think we needed an EEG today- hallelujah! We see G’s regular neurologist on Tuesday for his Botox injections and will discuss all this with him. The hospital doctor said the seizures yesterday were most likely triggered by the new schedule and increased activity at school. He did say school is very good though, because the new experiences and stimulation will help his brain develop.
We were discharged this morning about 10:30 am, went for Mexican food to celebrate a short hospital stay (G ate a few bites of guacamole!) and went home. And then Grayson proceeded to take a 4 hour nap- poor worn out baby. He woke up happy, played for a few hours, then went right back to sleep at bedtime.
Other than being exhausted, Grayson is back to normal- he was actually in a great mood all day. Hopefully this little incident was just a bump in the road and we can move on and have a great second week of school next week!