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...
19 comments:
Glad to hear that Trevy is doing well and following all the things going on around him. Tells me that he's anxious to get moving again! {hugs}
Hey Danielle. I've been reading the past few days, but haven't had a chance to comment. I'm glad everything seems quiet and peaceful today.
I just wanted to give you a heads up about the vision thing. You sound like you might be confused about it (as I was at the time). The right field cut will be in BOTH eyes, not just the right eye. It's not the most important thing right now, but you'll want to get a better understanding later when it impacts some of his visual motor skills.
Anyway, glad to see Trevor is improving. I hope the vomiting goes away soon.
Erin M.
Erin, I didn't know that about the cut being in both eyes. Explains why Julia seemed to have problems focusing at first.
Uneventful is good! Stable vitals...good! Glad to see that he has that brightness in his eyes. And I love the dreaming about the future...nothing wrong with that. :)
Glad that things are "uneventful". That's a good thing, like when have an uneventful plane ride!!!
I know you miss Toby and Bristel, but just so you know Toby is doing great. He and Matt have been playing Wii (Little League World Series) pokemon, DS, and baseball, baseball, baseball. Coach Ron, which Toby said he had to call Mr. Ron now that he wasn't playing baseball, took them to the ball field for some hitting fun. Right now Toby and Jason are pitching to Matt. They are having a blast. And maybe this time next year Trevor can practice pitching with Toby, Matt, and Jason.
So dream away all that you want.
All our best thoughts to you Jonathan and Trevy.
Ashley
Dreaming about the future is good and important. When Emmas partials came back my husband got all worried and said "she'll have to be careful in college - she can never take drugs" to which I replied "she's my daughter -she's not allowed to take drugs". A silly story about how normal we expect her life to be. For the longest time I was afraid to start a college savings plan but now I have decided to have faith in Emma and start saving.....for Harvard.
I am glad Trevor is doing so well. I know it's hard but look how much he achieved with seizure monster and everything that accompanies it. Now he just has to use his normally functioning brain. High hopes!!!!!!!
Uneventful is definitely good. Hugs to you all!
Echoing Erin in the explanation of a visual field cut. One of the neurosurg residents should be willing to explain that to you. (I be cool, too.)
So far as the distant future is concerned, so much technology can occur in the next 10 years that worrying about driving seems like (that old-fashioned saying) borrowing trouble. Maybe things are so good you are looking for something to be concerned about-?
I'm very interested as whether he receives OT and PT as an inpatient? Inpatient rehab for children is a topic with which I could easily clog this little box.
But I won't.
Prayers ongoing. Barbara
Glad things are uneventful. And that you are thinking about the future. It's funny, despite the hundred or so seizures a day, I still firmly believe that my baby will excel at both school and sports. Never mind that walking is tough right now. I just choose to believe it, and I think optimism about the longterm stuff helps me cope. I stress mightily over some of the day to day but figure I'll have plenty if time to worry about all the future sometime when I'm not so darned busy. So keep dreaming those dreams.....we all need them to help cope with the daily struggles.
Prayers still coming!
So glad Trevy is doing better :) I keep looking for your posts everytime I go online which is atleast twice a day. Revel in his bright eyes :) That irresistible twinkle is what our kids are and am so happy that the twinkling Trevy is back! :)
Hugs to him and you.
-M
Uneventful is definitely good. Hugs to you all!
Glad to hear Trevy is doing so well! Uneventful is good. I will never forget how "bright" Jackson's eyes were after surgery. They were so different. Trevor will be so much stronger in a few days! Praying for a smooth and quick recovery!
SOOoooooooo happy to hear things are going well. Bright eyes are SUCH a good thing. Many prayers coming your way
Regarding the vision field cut. Yes, there is a right vision field cut in both eyes but the right eye picks up the right vision field cut in the left eye so that there is no blank spot in the middle. Does that make sense? I was worried about that. But, Brandon is legally blind in his right eye. He was born that way, I think. When he was just ity bity, they patched his left eye in hopes of making the right eye stronger and he even had surgery on it. He only wears a contact in the left eye because they can't help the right eye. So the point of all of this...you would never know that he was legally blind in his right eye. He played all kinds of sports when he was in high school. He got a college scholarship to play tennis. He plays recreational hockey every Sunday (and he is pretty good). He doesn't have any special mirrors when he drives and (knock on wood) he has never been in a car accident.
Sophie ran into EVERYTHING after surgery. Chairs, walls, door frames. She had a huge knot over her right eye that just would not go away. Now she is just fine. She has adjusted. You would never know when it comes to her physical aspects. Cognitively, we are still working on it. We are trying to teach her to turn her head when scanning objects (i.e. picking out the picture of the dog from 5 cards spread out in front of her). But she always had problems with scanning so I can't say it is just because of the right vision cut.
But, with all of this said, I still know how you feel. It is just another hurdle that they have to overcome.
By the way, does the resident realize that half of your son's head is shaved with who knows how many stitches and just days prior had who knows how many wires coming out of his head and has dried up gunk (which I am not even going to go there) all over his head??? Really...does this resident think pulling a drain out is going to make you queasy???
Love and hugs to you all.
Oh, and one very important thing that I almost forgot to mention. Bright eyes!!! Already!!! That is WONDERFUL news. Because on Day 3 post-op, I was having a meltdown because Sophie's eyes looked so dark and blank to me. It wasn't until Day 4 that I saw that sparkle back in her eyes.
My little one had hemianopsia (I think I spelled that right) following his brain bleed, but it's faded with time--apparently that can happen in young brains. If you good the word then wiki has a perfect picture of it.
It's always the eyes with Trevy, you see it in every picture. I have faith that the rest of his body will take it's lead from his eyes.
It's great to read that you are all through to the other side.
Ian x
Funny about the term "uneventful"..
(I tell people that if we have an "uneventful day," we are doing GREAT at this point!)
Don't EVER stop dreaming for Trevor....Driving, college, whatever! He is WAY too young for you to even BEGIN to put "restrictions" on him...You are a very realistic person....And I know that you will be very cautious about what to expect...or not to expect....
With "The Beast" pretty much banished now, there can only be good development from here on out....He just may require a little extra help....But I see great things ahead for your boy!
Cyndi
I've made a new pact with myself. To not stop dreaming, regardless of what it looks like. I quit for a while because it was too painful to imagine -since there were 100s of (seizure) reminders a day that the odds were stacked against us. But having hopeful visions of the future replaced by thoughts of seizures and limitations made me hollow and numb. If I accept this for what it looks like now, I have nothing left to overcome.
Dream away. Picture him running, playing, and DRIVING! He's overcome so many odds already. Just think of how much more there is to come!
It must be agonizing to see him post-op with little strength. But, day by day he will get stronger and stronger and back to being Trevy again.
I've been thinking about you guys a lot and praying that any obstacles he's facing now will soon be behind him. And that leaving Detroit means leaving the The Beast as well.
Love ya! Hugs to you, Jonathan, and of course the lil guy, Trevor!
Glad to hear the "uneventful" news. The pix are so hauntingly familiar, it makes my eyes well up. Regarding the right side visual cut: an ophthamologist told me this trick to mimic the right visual cut - put your right hand beside your right eye like a horse blinder; put your left hand down the bridge of your nose like a horse blinder. You don't have peripheral vision to your right, from either your right or left eye, but if you swing your head to the right, you can see fine. Trevy will probably learn this technique because he's so little, but visual therapy can certainly help. Thinking of all of you - Jessica and Hollis
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