I left Houston like a tipsy sorority girl leaving the bars. I was happy, giddy, hopeful. I loved everyone. Everyone was soooo pretty. I stumbled home, ripped off my shoes and passed out in my clothes.
Then I woke up surprised I was not feeling too bad and, like a true party animal and masochist, I began to replay the events of the previous excursion back. I relived the news from Dr. Seto of Luke's chaotic brain waves. I flashed to the meeting with Dr. Curry when he mentioned the possibility of permanent paralysis by removing the tuber. I fast forwarded to the meeting with Dr. Coorg when she mentioned that even if this upcoming brain surgery helps, she anticipates the seizures coming back in a few years, if not sooner. I felt the cloud roll in.
In came The Houston Hangover.
You may have heard, little young bucks out there, of the legendary two day hangover that some experience in their 30's, but the Houston Hangover throws you off for weeks. The darkness used to be shooed away with McDonald's and a nap, but life no longer is cured in the drive-thru.
Unlike a sorority girl, I did not have the luxury of sleeping this bad boy off. Some things needed to change with Luke's medications fast or surgery needed to happen faster.
Cincinnati TS Clinic ran to the rescue, as usual, and made some big changes with Luke's meds. Dr. Franz was in touch with us the entire trip and had touched base with Dr. Coorg before the wheels hit the ground. He knew things were not good for Luke and like he had warned us three years ago, he didn't pussyfoot around.
We made big changes fast. Off Vimpat. On Felbatal. On Sabril. He knew it would be rough on us all but, again, time is not a luxury we possess. Rough how, you may be asking... #1 side effect for both, insomnia. Awesome.
Luke was a maniac. He was flipping out of his crib. Attempting to throw himself off of the back of the couch. Opening doors. Biting. Sucking. Throwing. Never aggressive because, come on, it's Luke, the most precious angel on the planet. He wasn't trying to hurt anyone or himself. It was more like someone who wanted to be removed from their skin.
He was up ALL night. He didn't nap. He was vomiting. He wouldn't eat. I was scared. It was a 24 hour job to keep him safe from himself and I didn't know how long it would last we had to keep up the pace.
ok, but I'm writing this all in past tense for some reason, like he didn't wake up this morning to start his day at 1 a.m. So things aren't fully past tense, but like shaking any big hangover every bit of healing feels like a victory. He is still up a lot. He is still seizing a lot and that is why we are getting surgery.
BUT... lets talk about what else he is doing.
This kid is walking. Like he can walk in the yard and rip out a handful of grass and throw it and then SQUAT down and get more. I have never been more excited to see someone ruining a brand new seeded yard.
He is kissing. Not only does he pucker up when you ask for a kiss, sometimes kisses are even his idea. Sometimes it is his idea for them to be open mouth. He is even trying some new techniques with a lot of licking involved.
He is hugging. I can't remember what it felt like to have him wrap his string bean arms around me with the purpose of connection and safety and love. Hugs are really underrated. Stop what you are doing right now and go hug someone. When they look at you like you are crazy and ask you what you are doing, tell them to shut up and that you are giving them a hug because you love them.
I will wait.
He is watching tv. His is sitting in his recliner. He is stacking blocks. He is using his left arm. He is working on puzzles. And by the time I post this he will have 3 new things I will want to add to the list, but I think you get it. Luke is back.
So, we think his background waves gave gotten better since going back on the Sabril. His seizures seemed like they were getting better, too, but they are gaining momentum again. They have changed, however. Before the med changes, his seizures presented on the left side of his body. This made sense since the tuber was on the right side. That's how brains work, if you didn't know, all backwards... Now his seizures are more dominant on the right side. I do not know what the team in Houston is thinking about this information. I am assuming that they still believe it is the same tuber, it is just presenting differently because of the medication changes. But to assume what a neurosurgeon thinks about such a complicated disease is laughable.
The Houston team will conference on Luke Tuesday and call later in the week with a plan and a timeline, but Marissa said there is a strong possibility we will need another EMU stay (EEG) to confirm that the seizures are still coming from that tuber. They feel fairly confident that they will be able to do the surgery before the holidays either because they realize Luke needs the surgery soon or, more likely, because they are ready to have the "we need to see other people" conversation with me.
I have been calling kinda a lot.
In my defense, they said that it would be 2 weeks and it will end up being 4. Doctor's had to be out for good reasons. I wasn't mad.. just wanted to make sure they didn't forget about us.
So, next week... hopefully we will have dates and plans and appointments and addresses and times and flights. Until then, I will just try to get hydrated and prepared for another binder of a trip. I'm not so naive to think grease and a few episodes of The Mindy Project will cure this one. I know it is going to be a butt-kicker. But, I also know, when we get back, there will be plenty of people ready to hold back my hair, bring me a pillow to the bathroom floor, and have a Sprite ready for me when I wake up.
This post is in celebration to the woman who redefined Hope for me as a mother. It has been one year since The Smith family lost our matriarch. We miss her everyday but her spirit and strength follows us where ever we go. Love you GIgi. Thank you for reminding us how beautiful life is.
Mother of two amazing little boys, one who just happens to be a TS warrior.