The PICU nurses convinced us both to head over to the International House last night. And try to sleep. Because we'll need our strength for these next few days.
So we tried. It wasn't the greatest night's rest. But it was something.
Trevy was awake when we made it back to the Pediatric ICU. Just laying there like a little angel. Until another wicked cluster. I guess I thought the IV seizure meds would give us something different than oral seizures meds? But if anything...his seizures are more violent than I've seen since our Vigabatrin wean. That's hard on a mommy's heart. Or at least this mommy's heart.
I love those pain meds though. Hate that we have to use them. And especially hate when it takes the nurse SO flippin' long to bring them! Poor Trevy was a moany mess. I can only imagine the pain he's feeling. Except I don't want to. Because just letting that thought flit through my mind makes me weepy. It just sucks that a little kid already seizure saturated...has to suffer even more during the attempt to escape the Seizure Monster. It's not fair. And that doesn't mean I don't feel blessed that we have this option. I do. But it still sucks.
The plan for today is to be relocated to the Video Monitoring Room late morning. It'll be more comfy than these sardine can quarters we're in now. It's like an uncoordinated dance whenever anyone has to move from point A to point B in here. Lots of toe stepping going on.
They'll continue to monitor his seizures on the EEG machine. With us pressing the button during each seizure...and writing down a description of what we're seeing. He will need an awake adult with him 24/7 through the next three days. Which is why the nurses recommended sleep. Bibi is due to arrive tonight. To help rotate the night shift.
Dr. Neuro-Surgeon will be up shortly. As will Dr. EEG. They are all studying the various tests and whatnot to come up with a Resection Plan. Which Dr. Rockstar generously said would need to pass our approval.
I couldn't help but wonder how true that is?