then comes the morning

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?


Liz said...

I am so sorry he has to endure all this. But even though he is awake at times, he would probably not remember any of it.

I am glad y'all tried to get some sleep, though I suspect it was not much based on your posting times. Do try to catch some rest when you can, it is easier now than when the surgery is over. You need to save up your strength for that.

I am so sorry the seizures have been so bad. I am praying they are the last he ever has.


blogzilly said...

Well, yes it's true, they do want your approval on it. But the truth is waddya gonna say? No? Sometimes I guess one might but most of the time it's going with your gut based on what a PRO is telling you, a PRO with some experience with families in your IS circle.

JSmith5780 said...

Yes, a parents opinion is valid, but truly when it comes to rbain surgery, what do we know??

Glad Bibi will be there to help you all through.

MJStump said...

So sorry that you have to see your little guy battling the worst of the seizures before the final face off.

I don't know what word is best to use to describe what the kiddos go through with these seizures...Brave just doesn't cut it, cause a brave knight chooses their battles, and this isn't something any little one would choose. My hubby would always say Kylie was his hero.

I wish every nurse out there would see and feel what you do when your kiddo is seizing and so uncomfortable...then maybe they would run to get the meds. I'd say to hang out at the nurse's station, but you need to be at Trevy's side too.

Glad to know that Bibi is on the way to help rotate through you all. Even if you don't sleep, you need to rest.

Yeah, it must always be your approval, but I can't imagine many say no after coming so far. This is all for Trevy, all so that he can fly so high and spread his wings.

Love and prayers and super hugs,

Colby said...

From the little that I have learned about these surgeries from all you guys, it looks like Trevor is continuing to do exactly what they WANT him to do....

I wish SO badly that this surgery wasn't necessary...But I am thankful there is this miracle option for your precious cherub....

(When this is over, consider getting him an agent! He could sell air in a jug!)

Hang tough!


Lisa said...

Glad you got a bit of sleep. The PICU nurses tried to convince us to go back to our hotel and we didn't the night of the first surgery, which was silly because she pretty much slept all night. Mommy guilt at work. Also glad to hear you have a third person to help with the night shift.

The giving consent thing is hard as everyone else above stated because the doctors don't want to remove any more than they have to either but seizure control is paramount. Fingers crossed that it's kept to a limited area!

Holli said...

I'm so proud of you guys. This must take unimaginable strength. From all of you...

I'm praying that these are the last few days you have to write down and describe clusters.

Love y'all...(yep, that's the Texas talking!) :)


Sinead said...

Its so hard to watch the seizures now but I hope that they give you the strength you need to approve the next step. Yes they come to you for consent. Its important. I told them that I was OK with the plan but if they found out anything when they went in that would permanently compromise motor function then I wanted them to stop short. It may seem insane but walking was the only skill Emma had mastered and I could not take that away permanently. Temporarily was fine by me. So they will talk about what they see and what they want to do and its impact and how comfortable you will be with all of that is important.

I hope for an end to the suffering soon. Ask for pain meds a half hour before they can legally give them whether you need them or not. By the time they come up you will need them.

Monica~ James~ Connor said...

Oh poor little guy!! I agree with Sinead, ask for the pain meds before he needs them. Ask how often he can have them...probably every 4 hours.. and make a list of when he gets them so the foggy brain won't have to remember when, so you can ask ahead of time so the nurse will have time to get distracted, and still get them to you at a reasonable time. You would never believe the number of times nurses get called to a room, phone calls, getting other meds, having to look up lab results, admissions, etc. & get pulled in way too many directions. But if you let your RN know at the beginning of their shift that you want the pain meds almost "scheduled" then she can make a mental note to get them to you at a set time. Ok...I will step off of my RN soapbox now...tee hee. I say all of this but I make the worst patient when C is in the hospital!!! I'm glad Bibi is coming to help out. I almost choked when I read someone had to stay up for 24 hours with him, so it's nice to have a 3rd person to help split up the time. Hang in there!!!