Unchartered Territory

 Friday, September 17, Mark had a seizure around 2:30am....and a second one at around 9am.  7 kids and I've never dealt with seizures before.  It was so scary.  I wasn't sure he even had a seizure in the middle of the night.  He was ok after so we went back to sleep.  In the morning, I went to my dr appt (I feel so bad about it now) and when I had just gotten there, Alaina called me and said it was happening again. Thanks to Anna's quick thinking, she got a video.  I told alaina to call dad and have someone else call 911.  I ran into my dr office, and yelled gotta go and left.

I ended up meeting them at Brick hospital.  Allie rode in the ambulance with Mark so he wouldn't be alone than Bob came and picked Allie up.  I was super surprised that they brought him to Brick and not Jersey Shore, but mom made a good point...not knowing if he would seize again they needed to get him to the nearest hospital.  They did blood work, and did a CT scan.  Around noon, we got word that they were transferring him to Jersey Shore.  He had to have a COVID test before being transported and he needed an iv.  His veins aren't that great so that wasn't easy.  They used an ultrasound that actually shows the veins.  It was really neat.

So we've been here since Friday (it's now Sunday).  He's been hooked up to a video eeg (was hooked up Friday night, got disconnected then reconnected Saturday).  Friday night he had 4 episodes of screaming and shaking, although he was alert and could follow commands, so they weren't seizures.  That's good news.  His eeg has been good, no issues.  His blood work has been good too (I haven't heard otherwise).  He finally started eating today (they've had him on iv fluids).  Bob came up yesterday and today so I could have a little break.  Yesterday I got to go home to take a shower, pack a few more things and just have a decent cup of coffee.

Tomorrow he'll have an MRI.  He needs to be sedated because it's a lengthy test and anxiety producing so that's the best thing.  The dr said the MRI might or might not show anything but that's the test he needs.  At least we'll have a baseline.

She also said he would need to go on a daily medication to prevent further seizures.  Because he has autism, he is 30% more likely to have seizures than a neurotypical kid.  It's just really strange that this is coming out of nowhere.  Nothing is new, nothing in his diet, no vaccinations, nothing.  So we are perplexed.  Hopefully we'll get some answers and go home tomorrow.  

He's been a trooper,  so good and listening and doing what he needs to do.  He's been so brave.  He fought the emt's getting on the stretcher at home, but other than that, he's been great.  He won't open his mouth to get his temp taken so they have to use his armpit, and he won't show his teeth to the dr.  He finally had a good nights sleep last night.  He's been afraid to go to sleep because he's afraid it's going to happen again. I don't blame him.

But he's been doing well since yesterday morning...just playing on the iPad, playing with his legos, and maybe watching some tv.  It's pretty boring up here.  I'm exhausted.  I haven't slept well, because I'm worried about Mark. I have a feeling I'll sleep good tonight. 

Allie had to have a COVID test done.  She was not feeling well at all on Wednesday I believe it was.  Took her to the dr, with a fever, sore throat, vomiting, etc.  Her rapid strep test came back neg (they were sending out the culture), so the dr wanted her to have a COVID test done.  Thankfully both of their tests came back as negative.

The kids have been troopers through all of this.  Allie even did laundry!!  Then she got real mad when Zumi peed in the laundry!  That's why I tell them to keep the laundry door closed and don't leave clothes in the basket.  Someone really needs to scoop out the litter box.  

Homeschooling is going great!  At least with all this going on I did NOT have to worry about school.  We'll just pick back up when he gets home.  We love homeschooling. 

Now for some pictures of my boy...