Warning: Video is 10 minutes long, but it was too fun not to show the whole day. I used to think I was biased towards Luke's cuteness overload, but you all are helping convince me otherwise. And like always, anything is more fun with Nana.
Rest of week Schedule:
Monday- CT scan. Meet with Dr. Curry (Man who invented/ pioneered laser brain surgery, Visualase). He and Dr. Weiner work closely and collaborate.
Tuesday- Meet with Neuro team, Dr. Koorg
Wednesday- Sedated for rest of imaging.
Thursday- Come home!
So many directions I could take this. So many holes to fill. Don't worry, now is not the time to fill them all.
There have been some huge moments for me this week which have left me on a constant upward mania swing. These personal awakenings, if you will, make me sound as if I am at Joshua Tree eating magic mushrooms, so I apologize, but clarity, gratitude, and, best of all, peace comes with this trippy- hippie, communal love-fest that I am on.
To get to where we are now, we have to go back a little bit. Or should I say down down, down, in the hole I let myself fall into this weekend. The trip to Cincinnati was...confusing, lets say. We went in an emergent state with Luke. He cried the entire trip (2 hours) up highway 71 North. We got there and were rushed through the ER. We received some meds that didn't work and then we waited... for 24 hours. Luke got a load of Vimpat and we were on the road headed home the next day by 6. Luke was no longer in pain, but I could tell he was continuing to have the seizure like activity that brought us up there in the first place.
Now, don't get me wrong, he is doing better than a few days ago, but it was just a tough trip. Nothing really happened and nothing really changed other than doses of meds. We ran up with so much momentum, is it selfish to say it was anticlimactic? I mean, I didn't want them to rush him to surgery, but he had 20 seizures in one day. Shouldn't I just be happy that Luke is doing better? Sure. But, that didn't mean that driving home seizing and smiling as opposed to seizing and crying didn't feel defeating.
So what is the plan?
The plan is to simply get back to where we were two weeks ago. A few seizures a day, but stable and comfortable so that we can get to Houston.
Why is Luke still having this subtle activity?
Well, we have gone back up on the Vimpat that we had begun to wean off. Dr. Franz very clearly stated, for those who were on the fence about what the med was doing to Luke, that it was not "poisoning Luke" and making him so wobbly. What has happened is that the seizures are localized. This means they are not spreading across his whole brain when they start. Sounds like a good thing, right? Except, it is like caging up a wild animal. Yeah, the rest of his brain is 'protected' (I use that loosely) but the part in which the seizure is being contained, is getting constantly attacked. He compared it to stroke-like repercussions. The brain is not dead, like in a stroke, but it has been through the ringer. Dr. Franz, from the moment we started seeing pop-up activity associated with weaning the Vimpat, became very worried. He said it was like a house fire. It starts in the frying pan and you think its no big deal and the next thing you know your home is engulfed and you are sitting in the ER with an IV of Ativan.
So, what's the take away? Where is the enlightenment? What do we do with these moments that land with a dull thud? Ok, stick with me through this one. Two things will be apparent. While a Hoosier at heart, I am not a farmer. And you will understand why the good Lord gave me boys.
Our experiences are like farmland. Some times, some farms, are more... fertile... let's say, than others.. These weeks/ months/ years has been abundantly fertilized for us. This plot of land that I am working with just got yet another truck load of manure. But, what I found is if you put enough goodness into and around the said excrement, a weird thing happens... something grows. So one option is to do nothing with these terrible truckloads. You do nothing and you know what you get? Rotten turds and flies. And couldn't we all go on and on about that kind of person, I mean field? But I'd rather put on my Car Hearts... Carharts... and get dirty. I'm trying to grow some pumpkins. (Pumpkin Spice fo' life) So your other option is to take your fertile farmland and get your butt out in the field with your tractor or whatever it is that people use to plant stuff. I was going to say hoe, but even though I know for a fact it is a real tool, I'm tryin to keep it classy. Ok, so you are out there tilling the land. Watering it with bittersweet tears of seeing your three year-old in his new wheelchair. Feeding the plants with the Miracle Grow of the soul, laughter.
My Miracle Grow moment happened while sitting around a table with people I have loved for 20 years, laughing about the most inappropriate topics imaginable. It was magic. Seriously, I can't even vaguely explain what we were discussing to make it appropriate for my more mature audience. It was terrible and disgusting, but as I left my stomach muscles were sore (I am way out of shape if laughing makes me sore) and my face hurt. To be around people who want you to be honest but also challenge you to want to try to be joyful, even when you are up to your knees in it, is hard work, but it's good work. You put enough good stuff in to a field that full of crap, it is impossible not to get one heck of a yield that you can share with everyone.
Let's raise our pumpkin spice lattes in the air and toast to helping each other shovel the slop.
Here's to the harvest. it's coming soon, brother.
I know some people are probably sick of me blowing up their news feed with these updates, but I know there are others of you, Luke's Ride or Die clique who are like, "Oh my gosh... why hasn't she posted... what happened?!?!" Panic ensues. I got you. I'm here. We are all good.
So, let me say. Luke's bone marrow responded beautifully to the "white blood cell making" medicine, Neupogen, he took yesterday. He also never ran another fever the whole time in the hospital. His seizure count was T-9, W-7, R-3. We are all over the place with the amount and the intensity. These seem to be over and you can almost see a spark catch him. It will happen a few times at the end of the seizure and it really ticks him off. All to be expected with the amount his meds are changing right now, but not easier to watch. It makes things so much harder when you can't explain to him what is going on. When he cries after a seizure, is it because it hurts? Is he scared? Is he mad? Or is it a neurological response? He used to laugh before he had one and I'm pretty sure it wasn't because it tickled.
Luke actually started feeling so great last night that he only slept for about 3 hours. What did he do the other hundred hours you may ask... sing to the entire neurology floor. He had a party and demanded I come. He seems so much more vocal in the past few days. I am associating it with the reduction of Sabril, but we have so many moving parts right now it is hard to say. Needless to say, as soon as we got in the car he bailed on me. We are home and there is so much more to discuss. Preschool? Surgery? Medicaid? Blood? (nice word bank) But I am signing off tonight because the 3,000mg of caffeine that I have ingested in the past 72 hours did its job, but clocked out about 2 hours ago. It is done and so am I.
P. S. Thank you all so stinking much for the love, text, prayers, and support not only for Luke, but for the whole family. This was an unintended repercussion of this blog and it is really overwhelming.
Mother of two amazing little boys, one who just happens to be a TS warrior.