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.
I am so naïve. Why in the world did I think that last blog post was going to work? A subconscious pep talk of the way that I wanted to feel, not the way I really did feel. It was a nice try on my part, but I think I have to mark it a fail.
This week I was supposed to be relieved. I was supposed to feel better with these answers. I was supposed to have a sense of order. I do not.
I am rethinking every medicine change. Every dose. Every move we have made in the past 9 months. I went back to December of 2015 and read every email I sent to Cincinnati.
His brain waves when he was not seizing were normal except for one area and now all parts of his brain are misfiring even between seizures.
He was having 4 seizures a week and now he is having 4 by lunchtime.
He could stack 10 blocks in a magnificent tower and now just putting one down is a challenge.
What did we do? How did this happen?
Was this inevitable? Was this an example of TS being a force to be reckoned with? Is this the chaotic sabotage that this disease provokes?
Did we do this to him? Did we miss something? Was there something that was helping that we need to revisit?
I went back in the records and picked up as many details as possible.
Sam sometimes wanders the house and brings me a sock or a piece of cat food or a big piece of fuzz. Thank you sir. What would you like me to do with these random items?
I did the same thing to Cincinnati. I collected every random piece of information from the trip, from the past, from his behaviors at that very moment and I dumped them all into the lap of Gail and Dr. Franz, our team in Cincinnati. Please just figure out what to do with this mess. Where do these random items go?
I am so scared of what the next few months will hold. Will he continue to regress the way that he has? He has little development left to lose. Should I fight to get the surgery moved up, a surgery that may not work for more than a year and possibly leave him paralyzed? Should we try to go back on everything we were doing in December or is the momentum of this tuber snowballed beyond the capabilities of medicine?
So, I am a bit all over the place right now trying to figure out where this questioning will take us and what path is being prepared for us. I feel sad and scared and then I get a gift like this weekend…
A wedding. A normal wedding is like stinkin’ Mary Poppins and her spoon full of sugar. This wedding was like some kind of super potent Stevia. The weather. The location. The couple. The guests.
It reminded me of where I am from and who I am.
Who we are.
We are a crazy, dysfunctional, loyal, overly affectionate, family. Blood or no blood, this weird jacked-up family that we have created in our small Southern Indiana community is something to be proud of. We have hated each other, loved each other, dated each other, dumped each other, danced with each other, cried with each other, and laughed with each other. We never miss an opportunity to tell each other that we love each other or when to go reapply lipstick. We do without apologies, explanations, and boundaries. We grab anyone who is closest on the dance floor. Because if they are out on the dance floor carrying the party like it is a responsibility to bring the fun, chances are they are one of us.
I missed my family.
And now, to have you back and feel you with me, makes this whole chaotic mess a little more organized. The Red Cross has been called in and delegation is beginning. I know you are ready to board up with windows and grab the sandbags when the storm starts to roll in. And when the storm hits, our basement will be crowded. All of us packed in together, holding each other, holding our breath, waiting for the impact. We are scared until we remember what we do. We don’t cower. We don’t hide. We dance.
*Below is a video of the last two days of the trip. We were tired so mom isn't reality TV caliber. Disappointing, I know. Don't worry, she brings it on the daily...
For the first time in a long time, I feel like there is nothing else to say. But I know better than that. I feel like I have said what I need to say, Rewinding to the past and filling in the wholes, Forwarding to the future to explain what could be, and pressing Play to let you see the day to day. The meetings with doctors force you to do the same- Rewind and tell the past, Press Play and assess where we are now, and Fast Forward to the possibilities of the future. Over and over, you continue to reel yourself back to the present, the only place that is safe.
Rewind, Fast-Forward, Play.
When I stay focused on feeding, diapers, blocks, blanket, singing, medicine, none of it seems so overwhelming. I walk around this big-ish city navigating trains, crosswalks, shuttles. This isn’t so hard, being the mom of a very special child. Ms. Independent. Ms. Self Sufficient...
And then it hits me… I have a mom here to help me every second.
I press Pause. I have a job. I am in school. I have a baby.
As busy and heavy as this week and a half has been, it has had laser focus. No emails from work, no calls from Medicaid disability, no group projects for school. It has presented tough answers but there has been nothing to let my mind escape the truth. I have been forced to have all the feels, I have let it soak beyond the surface and have had the luxury of my mom as a safety net. A safety net to catch me when I need to check out and stare into space for 15 minutes and let the rogue tear squeeze its way out. I Fast-Forward a few years and watch myself pick Luke’s huge body out of the tub. My wheelchair accessible van totes the family around to therapy and appointments.
“Oh, you shouldn’t think like that. You should have faith it will all be ok,” you may be thinking.
Well it will be ok, we will be ok no matter how it ends. The reason we will be ok is not because all our problems are gone, but because we face them without fear. To do this, to not be afraid, I am going to tell you that I HAVE to 'go there' every once in a while. I have to entertain all the possibilities. I have to Fast-Forward a little.
This is not a Lifetime TV Show. The ending isn’t that predictable. There may be a few more twists and turns than that. I have to prepare myself for all options. I only do it for a second or two. So don’t worry. I don’t go too far, I don’t watch too much. I don’t go to the credits, I am not a masochist.
I hate doing it but I know it is an emotional exercise that has to be done. (For the record, I am not a fan of any type of exercise- physical or emotional) I am relieved to have had these moments to process, not just to Fast-Forward, but Pause as well. I know I have to do it now because when the wheels of that tiny excuse for a plane hit the ground tomorrow, it is right back to the main picture show. Weddings, wisdom teeth, Medicaid meetings. And Sam. Oh Sammy…
(Don’t even talk to me about this kid right now. I am not even going to try to capture who Sam really is yet. First of all because I haven’t seen him in 8 days so I will be full fetal position in this Radiology waiting room within two sentences. These poor parents are scared enough right now, they don't need to try to figure out what is wrong with me. But the other reason is because he is such an interesting human. I am actually nervous to try to put who he is into words. If Luke is my baby boy. Then Sam is my main man. So… that conversation is over for a while. I’m in public trying to hold it together people.)
So Luke is back in imaging now. We had a great day yesterday meeting the neurologist. Dr. Coorg, and filling her in with Luke’s story. No real news yesterday except for something that hit mom kinda hard, so I thought maybe I should clarify.
IF we find where these seizures are coming from and IF we remove the problematic tuber and IF Luke’s seizures stop, that doesn’t mean they are gone for good. As a matter of fact, they expect the seizures to return. It reminds me of a desperate conversation I had with my first principal, Terri Boutin. I explained to her that my class would be perfect when my most challenging student would make everyone's life easier and move schools. She was the problem, not my inexperience and immature behavior management skills. She just nodded her head and smiled and with all the wisdom and kindness and patience in the world, explained to me that when one moves there is another one just waiting to pop up in their place. There is always one waiting for their turn to have the spotlight. Oh that child haunts my dreams. But she wasn’t lying. She left and within weeks, I had another one that was the problem. It was them, not me… wrong.
But it's the same with tubers.
We may remove this tuber on Luke’s right parietal lobe and he may be seizure free for a year. But they could very well return. We are buying as much time as we can to let Luke's brain develop and rest. However, it is a possibility that another tuber will pop up as the problem child in Luke’s brain.
He has more tubers in his brain. They are taking pictures of them right now. He has abnormal activity in ALL parts of his brain. The potential of another tuber becoming active is… likely/ expected/ probable? This is where it is important to play the movie out a little bit. We have to absorb a few potential endings. If I don’t then what do I do when it happens? I can’t be so shocked I freeze. I have to know that this isn’t a Choose Your Own Adventure book. We can only help so much. He will still have TS. He will still have tubers.
What do we do then? This is where I let the doctors tell me that we will NOT be out of options and that we will “cross that bridge when we get to it”. That is doctor talk for, “Simmer down sister...Quit getting ahead of yourself. One surgery at a time, crazy.”
So that is where I am. I am pretty sure I said I have nothing else to say, but that is always a lie.
This movie that I am in is surreal. Sometimes I see the trailers to other movies and have a little 'Goldilocks Syndrome'. Their movie is too cheesy. Their movie is too dark. Their movie looks juuuuust right. But I never have the time of energy to watch the whole movie and lose interest soon enough. I have my own to try to keep up with. There are ups and, as of late, a lot of challenges. But, if anyone should win an award, it is the casting director. Even the toughest stories are worth watching if the characters make you fall in love with them. I have seen some Oscar worthy performances.
We all have a movie that we are living. We all have plot twists. We all have characters come in and out of our lives. But that makes the movie worth watching. So here is some fluff to pad the heaviness of the past few posts. Here is the other 80% of the Houston episode. No more Fast-Forwarding to the what-ifs. No more Rewinding and reliving shoulda, woulda, coulda.
Time to come back to center and press play.
Well we weren't coming down here looking for a unicorn.
We prayed for clarity and answers and understanding and that is what we are getting. No one said the truth was easy. This trip to Houston supports whatever jaded person said that in the first place.
Nutshell of the EMU findings:
Luke has a tuber on his right parietal lobe. This, Dr. Seto believes, is where the seizures are coming from. When kids are little, like Luke, it is much harder to tell where the seizures start on an EEG because they move and spread in split seconds. So they may be showing in a different part of the brain by the time the epileptologist starts to read the EEG. This is why it was so important that I didn't leave Luke's side the entire EMU stay. I had to yell into the speaker system the second I saw it beginning and then when I felt like it was over. During the seizure, I had to explain every little thing I saw, "Eyes deviating to the right... Left toes still twitching... Head drop... Arms and legs completely rigid" They had a video to monitor, but I made sure to add all the subtleties which somehow helped this genius woman. Who would have known, me just running my mouth finally made a situation better, not worse. Only took me 32 years.
As she inched closer to feeling like she had something, she decided to add 20 probes to make a total of 50 probes on his head. This gave her the data to say, without a doubt, where the big seizures were coming from.
Within 12 hours, she came in and told Luke he was an overachiever. He was even so thoughtful to stay up both nights seizing so we didn't waste time with silly things like sleep. She had captured 17 seizures in his 45 hour EMU stay.
We did leave with more news than we bargained for. We left with the news of Luke's background brain reading, which again is another fight and, yet, another component of TS. If you aren't up to date on blogs, it was basically his development and regression on a piece of paper. It showed us what Luke's brain looks like when it is NOT seizing. Its scary and it really makes me sad... It makes me sad for him, but, really, if I am being honest, I am sad for me, too.
BUT what did we come here looking for?
Why is Luke regressing? Is it because I have dropped the ball somewhere? Did we take him off a critical medicine? Should we have tried something else?
Answer. No, His brain is battling itself. Our weapons of therapy and medications were pitiful compared to the warfare it was bringing on itself. Came for answers and we got 'em. Now we can work on the next step.. after we eliminate the other battle. Seizures.
AAAANNNDDD we got that answer, too.
The real answers we were looking for...Where are the seizures coming from?
Answers. Got 'em.
Dr. Seto says, right parietal lobe. So we have one piece of the puzzle. Now we see if CT, PET, MEG, MRI, and functional MRI all say the same thing.
The hope is that all data points lead us to that same tuber. Start chanting "Right Parietal Lobe" now and continue until Wednesday evening, thanks.
CT scan took under 15 minutes to check-in, fill out paperwork, name get called, get strapped down, images taken, and back out to waiting room. I have waited longer for a Pumpkin Spice. Both worth well more than 15 minutes.
After scan, we met with Dr. Curry. First, let me say that he is an IU grad and I didn't know until just now. I am kicking myself. Obviously if he would have made the connection of a fellow Hoosier, we could have been bumped up the list a little bit. I have so many new IU hoodies I could have used...Clawing my way to the top.
Everyday I'm hustlin'.
Luckily by the time we met with him, he already had access to Luke's scan. Within 2 minutes of meeting, he pulled up the scan and gave us an answer. Right parietal lobe. YES. Right parietal for the win! A clear tuber to remove. But wait... No one said answers and clarity make the truth easier to swallow.
The doctor asked us if Luke was having any issues with his left hand...
Yes. He has lost almost all use of it.... Why do you ask?
The tuber is EITHER sitting right on Luke's motor strip for his left side so seizures starting in this region OR (and more likely, he says) seizures are happening very close to his region of the brain and the area around the tuber, this motor strip for his left hand, is in a permanent 'postictal state'. Have you ever heard of people getting very sleepy after a seizure? This is because their brains are beat from the trauma, postictal. Dr. Curry believes that is one possibility as to why Luke has lost motor skills on left side. That part of the brain has been so flooded with seizures through the years, it is in a constant state of 'worn the heck out'.
Why does this matter? I mean, I know it is important, it is Luke's brain and hand for goodness sake, but why am I adding this to update?
If the first hypothesis is correct, the tuber is sitting on Luke's motor strip, taking it out can cause paralysis.
Answers, not unicorns.
Ok, ready to turn the corner? The second hypothesis is actually more likely based on what he saw in the scans. The other imaging Wednesday will tell us much more, but as unadorable as this post is, I feel like when doctors start throwing out words like 'paralysis', it is news to share. Its real and hard and complex. But these are all words that the doctors not only used for TS in general, but specifically for Luke's case. He is an overachiever. Remember?
We came for answers and that is what we are getting. I didn't ask for a puppy (dealing with enough poop already) or the lottery (good lookin' out Humana Insurance) or a Porsche (need to fit the wheelchair and two car seats).
I came for answers.
The answers made sense which leads to understanding.And understanding leads to peace.
I am not going to lie. There were a few stops along the way. But I am going to give myself a "W" for the quick turn around in emotions.
Answers. Understanding. Peace.
I got what I need. We got what we asked for. I don't need no stinkin' unicorns.
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!
Mother of two amazing little boys, one who just happens to be a TS warrior.