Detroit EEG - Day 1

It's 1:35 am and we're all settled in here at Children's Hospital of Michigan. Dominic, my MIL, and I arrived here at 1:00. We're nice and cozy in this little room with only a couch for a bed and a recliner. Doesn't really matter though since we're not allowed to sleep. I was actually praying that Dominic would have some seizures tonight since he hadn't had any all morning or afternoon, despite being on only half of his normal dose of meds. I figured that would be my luck that we would spend 3 days here hooked up to an EEG and he wouldn't have any seizures. But, I was not disappointed. At 10:20 pm he had his first and he has pretty much had one about every 20 minutes since. They are much more intense than his usual ones. He projectile vomited during one of them. During his second one, it was getting close to 3 minutes and all these doctors and nurses came running in scrambling around to find his monitors and emergency meds. But, he's a little trickster and seems to come out of them on his own right around 2 1/2 - 3 minutes. You would think by now I would be used to this, but it never gets easier to watch your baby seize. Especially when all the doctors and nurses around him seem to be freaking out and getting the oxygen mask and IV meds ready and waiting by his bed. But, this is what we're here for.

Super Duper Trooper

I'm wide awake thanks to the latte my mother-in-law got me about two hours ago and am just sitting next to his crib, waiting for the next seizure. I think, because he has had so many seizures since 10:20, that they may go back up on his dose of meds. But we probably won't know until the morning. They also have to cath him to get a 24-hr urine collection (ordered by his nephrologist in regards to his kidney stones). I think tomorrow will be a long day with no sleep, but I am so, so, so grateful to have my mother-in-law here. She keeps a steady supply of water, snacks and coffee coming. She is amazing and has stayed awake with me the whole time. She's got her watch ready as soon as he has a seizure and times them for me. We played a few hands of 500 Rummy before the seizures started and I'm pretty sure she's going to make a midnight (or I guess early morning) Subway run for us :o) I don't know how I could have managed this without her. She rocks! But I'm pretty sure we'll both be zombies tomorrow. I'm planning on posting each day were here, simply because people keep asking how it's going and I don't want to have to retell everything over and over again. Plus, there really isn't anything else to do here. So, until tomorrow....