Other than the random projectile vomiting. Which Jonathan insists is revealing my hidden Matrix moves as I try to avoid getting splayed. Thing have been pretty...ummmmmm...uneventful.
Swelling dramatically decreased.
Vitals are stable.
Trevy seems pretty comfy all around. Occasional fussies. And hates hates hates being touched by anyone in scrubs. This is a good thing. We're keeping his pain meds fairly regular...every four hours or so. I am going to try stretching him out today. Just to see.
We did see two spasm-ish seizures Saturday night. But that was it. Of course...I'm still quite jumpy. And Dr. Rockstar emphasized that Trevy is not by any means "out of the woods". I'm assuming he means the woods in which the Seizure Monster lurks. In Trevor's case...that would be the weird blip in his right hemisphere (since the woods to the left have been demolished). Which may...or may not...wake the Beast. Only time will tell really.
We held him today as a neuro-surge Resident pulled out his JP drain (he still has his Becker Drain for a few more days). She warned us that it might make us queasy. I replied...maybe...but we're the parents who asked to see his removed brain tissue. Now that the JP drain is out...we can give him a bath! I'm dying to wash all that gunk outta his hair...and see what can be done to salvage the curls. I'm dead set against just shaving it all. I'd do a curly mohawk...but the incision is right down the midline. And I'm just not sure OCD me would dig a lop sided curlhawk. We'll just have to see how he looks cleaned up. It feels odd to me...that I can rub his ear still caked in dried blood...and not feel queasy. I'm sure we're still in the numb place.
Trevy is still very very weak. Which is weird. Because he's always been so full of fight. So to see him so...quiet. So limp. So unable to sit up. Is rough. Although his eyes are bright. Dr. Rockstar commented on that several times when he stopped by. It's cute to see his little head so still. So gunky. On a sterile white pillow. But his bright little eyes darting this way and that. Following everything. Soaking in everything.
Except in his blind spot.
While most of the function loss from the MST will be temporary. The visual field cut in his right eye is not. That is a forever loss. Which breaks my heart. Because his sight has always been such a vital part of who he is.
But here's the thing...
I asked a question today. A question that just jumped from my head to my mouth. Unfiltered. And reveals the depth of hope I have for Trevy. A depth that before Friday...I could not muster. Because Trevy's future was grounded in the reality that comes with having 100s of uncontrolled seizures a day. It was future that didn't involve things like...
Will he be able to drive? What with a vision deficit and all?
Cause I asked that question today. And it struck me...somewhere between Friday and today everything has changed in my heart. Cause I asked that question. A few days ago...the hopes I had for Trevy were nowhere near being behind the wheel of a car. Although that doesn't mean that I didn't have great hopes for him. Are you kidding? A million times a day Trevy has made me feel like the luckiest mom on the planet! It's just the equipment I imagined did not include special mirrors to correct visual field cuts. So that he could drive a car. Now? I let myself go there... It's been a very very long time since I've let myself go there.
Although pesky realistic me knows that all this is WAY too premature. The road ahead of us is WAY too long. WAY too windy. WAY too uncertain. To see the end.
But who knows? Maybe some special mirrors will come in handy along the way...