Don't put your battle gear away quite yet.
Go get it.
All of it. The big stuff, too.
Its not over. Not even close.
Lots of news come at you hard and fast with no anaolgy to buffer.
-80% (not 100%) if the tuber was removed
-6 depth electrodes were placed in his brain to capture post-op activity
-the new "hot spot" is a cluster of tubers (2-3 clumped together)
-the new hot spot is very close to Luke's left motor track and we may not be able to get this tuber out with laser.
-Luke just had a seizure... like a normal, regular, reason-we-did-brain-surgery seizure (I was pretty sure that wasn't supposed to happen)
I wrote this cute little nice post after surgery to go up today but it's not really an accurate tone for how I'm feeling right now.
Worth reading if you are in the mood to be positive.
To add insult to injury...Luke got finished with surgery around 11:00 and took us on a little 4 hour trip to hell while we came out of anesthesia and finally got enough morphine in his system to rest.
I'm actually going to wrap this post up before I get myself in trouble. I find it a Christmas miracle that I haven't said any cuss words yet because, honestly, they have taken the place of the "Rocky Theme Song" on a loop in my brain.
So, go get your armor and tell the troops there is no rest for the weary.
We aren't done yet team.
Go throw your shirt in the washer. Go get your war paint. Go get your sheild.
I am not afraid. I will not back down. I will fight.
And so will you.
So get your butt ready.
I am going to need another day from The Army like yesterday. Marathon not a sprint people.
The battle may not have gone as expected, but now I turn my eyes to the war.
Love you Soliders!
Last night The Wizard of Oz was on this thing called "regular TV" that we were forced to watch in our hotel. It was either that or BeachbodyTV and I think at this point I have made my stance clear on the whole exercise situation.
This is what is now responsible for the constant "Ding dong the witch is dead..." song rolling through my head. I told you all, I am not that musically mature. Or regularly mature for that matter, but that is another day.
There is this whole story that you miss when Dorothy drops her reckless butt in the middle of Whoville or where ever the story finally begins in color. There is all this pain and angst that stupid witch brought on that cute little land. We don't know their story, we don't know their loss, but we can tell by the pointe ballerinas that they have waiting in the wings that they were ready to celebrate her demise.
They knew, before the audience, that even though they celebrate, they are not done fighting. They know there is time to breathe and be thankful.
AND then we meet the wicked witch of the West. She's new to the scene a lose cannon and we don't really know her well enough to know what she is capable of. We fear her becuase she is the unknown and also because she is busted.
Ding, dong the wicked witch is dead...
Our tuber is gone.
That tuber we knew so well. We hated him, but we had developed a bit of a strange relationship with him. I knew what to expect. I blamed things on him. Everything would be ok once he was gone.
And now he is gone. And a new villian creeps out of the darkness. Not quite the entrance as the Wicked Witch. Not sure this bad momma is coming in hot, cracking up like a lunatic. She is sneaky. She plays nice at times. She has hid behind her Hitler-grade brother for years. But now she is getting the stage and we will see if she is all talk or if she is ready to try to step up in his place.
But we have her number. No more sneeking past us. We have a New Yorker and a Hoosier (kinda) working this one. Talk about a tag team.
The doctors removed the tuber but they are not letting Luke out of the state of Texas until they get a beat on this Wild Card.
They have placed depth elecrodes through Luke's skull and in his brain. They are bolted in and will capture electrical activity from 6 different places around the right side.
We will leave those electrodes in his brain for 5-7 days OR until we see something we don't like coming from this area. IF Luke continutes to preform this new seizure type even after the orignial tuber is removed, there is a possibility for another ablation.
The location of this tuber is a little more complicated and we will have to take language and left hand gross motor in to account before we determine if another ablation is a possibility.
But that is like 3 steps down the line and it almost seems silly at this point to plan that far ahead. We know better.
We can continue on with the parade. We have earned it for sure, but we won't forget that the witch has a sister and we aren't sure yet if she is going to earn herself a little visit from the baddest crew around.
Team Luke coming for you baby!
Long day with little time to process information we received, so nothing cute to throw at you today I'm afraid. This little train is out of steam.
-surgery still on for tomorrow
-check in at 6:30am
-ablating tuber on right parietal lobe
-inserting multiple depth electrodes to monitor concerning areas.
-leaving electrodes in for days/ week to capture possible seizures
-possible second ablation next week based on findings of electrodes
Will follow up with more details tomorrow. But my Baby Sam is here tonight so you are just going to have to wait.. hoping that he and Thomas the Train can fill my tank up with some good coal.
Feels like the trip should be ending but instead we are just beginning.
Weird day. Hoping tomorrow can get my back on the right tracks.
I know that you know there is always way more to tell. At this point we all understand TS is never a one-and-done kind of thing. But neither is life. There is an asterisks that goes with every story, every chapter. And this one is no different. Just like last visit, there is always the fine print.
I hesistated to even share this "wait and see, it may be nothing" kind of information but you all said you are all in.
So here we go...
There may be another place, other than the big nasty tuber, that is causing Luke to seize.
We were very prepared for this possibility.
We knew coming down here that we would probably see more action than just the one tuber since he has been off the Afinitor for a month (the drug that has kept Luke from having 50 seizures a day). Going back on the medicine after surgery will most likely give us control of this new seizure type.
Will we monitor with depth electrodes? See if we can remove? Wait to see if we can treat with meds?
We will have more to go on tomorrow.
Hearing the possibility that surgery may not take care of all seizures was momentarily deflating, but, again, not surprising and definitely not going to break our spirit and depleate our hope.
We continue to live in a world of cliches, so I reach in my bag and pull out my A-Day-At-A-Time card.
We knew there was more to the story.
And I bet at this point, you did, too.
The dawn has arrived.
After digging through 30 episodes, Dr. Masters JUST (8:50pm) finished analyzing Luke's "remarkable" seizures and came in to deliver the news that YOU were assured we would be getting. I, on the other hand, am not going to lie, for a few hours of the painful waiting today I started to prepare myself for other all the other scenarios and possibilities... but we don't have to go to Hypothetical Land this evening.
The large "typical" seizures are very clearly STILL coming from the tuber on the right parietal lobe .
THE PLAN IS A GO*
*Nothing is in stone yet, obviously. We still have to meet with Dr. Curry and Dr. Weiner Monday and confirm the plan. They could feel differently about the readings. Or they may want to monitor, with depth electrodes, other places in his brain that have started to get a little sassy since we have been off of the Afinitor in preparation for the surgery (it is an autoimmune suppressant). But honestly, you could stick a depth electrode in my eyeball right now. I am so relieved and thankful and (I'm going to go there)...excited.
You guys... we may be getting a break.
Like this may be really happening...
Ok, that is all I am allowing myself to do. I already possibly jumped up and down with mom and we maaaay have high-fived. Time to reel her back in. I have too romantic of a brain to let it start snowballing out of control with possibilities...
Stay in the moment.
Enjoy the morning's warm sun.
We made it through another dark and stormy night.
I will sit on my proverbial porch and sip my real life coffee. I will listen to the silence and feel the stillness in my heart. I will notice that even though the load we carry is great, it is just a little lighter today. I will take a moment to appreciate the promise of this new dawn.
Yesterday was a worker bee kind of day... go, go go... do, do, do. Plenty to keep you busy and your mind out of the darkness. Until the night comes and you are forced to address what the day before you holds. To say that I am axious is a bit of an understatment. Something about the lights in the EMU make me see Luke's TS a little more clearly. Just like the last trip, talking, observing, answering, reporting... It makes things a little more real. And I guess, every once and a while, my reality bites... Hoping the Darkness of the last night cliches itself into a Beautiful Dawn.
I tried to write a post that was just full of gratitude but also funny and witty and yet genuine and I really couldn't do it. I can't thank you enough, for your support, but also being with me. I don't know how to say thank you for what you have given me and my family. It's a definite character flaw. I'm working on it.
So, I will try... thank you. Or how about THANK YOU. Ok, no, that just seemed like I was yelling at you... but for real. This could have been the darkest time of my life. And as tough as it has been it has been the richest.
One of the many families that have spoiled us are the Koerber's. They are part of the family we have created. They are such an inspiration for resilience and growth. In keeping with their amazingness they wanted to use their Christmas party to raise money for Luke and to help spread his story. Jacquelyn asked me if I would write a little something to tell Luke's story... I started to do what she asked, I really did. Then I accidentally made a 5 minute YouTube video. Oops... It is being played right now at the party. Possibly a little bit of a mood kill, but I know some of you have jumped in to this crazy show a little later in the season. I understand that you probably don't have a free 7 hours to go back and catch up on past blogs so I want to share this with you to get you caught up.
Years 1-3: The Cliffs notes.
I have woken up every morning for the past week with the theme song from 'Rocky" blasting in my head. All day, as I walk the halls of Mt. Tabor Elementary, as I put the dishes in the dishwasher, as I work on homework, it feels like I am in a constant roll of opening credits. It's a movie about a mom just trying to get by, doing her best for her two boys, preparing for a second brain surgery for the oldest.
Its a long opening theme song.
Pretty generic, I know. I wish I had a better song palate and chose something way more hip or complex. Something that communicated my tender side, my deep side, my theoretical side.
Truth is, right now, I don't have those sides.
All I have going on is Rocky.
All I can feel is the fight.
All I can do is go-go-go.
I don't know why Rocky though. Its not really a secret, I'm not much of an athlete. I have pretty much sworn off exercise until my pants don't fit anymore.
But there are some people (You know who you are... weirdos) that need it. When other people have too much to drink, they eat a cheeseburger and go to sleep. You guys, you all go to hot Bikram yoga to sweat it out. When other people get overwhelmed, they crawl in bed and binge watch 'New Girl'. You all, you weirdos, go for a run to 'clear your mind'. You don't lift and jump and bend just to get in a bathing suit, you all even do these ludicrous activities outside when its cold!
You do it because you like it.
Because you need it.
Because even when you hate it, you know you are better for it.
So, I mean, I kiiiiinda get the hype. Don't get me wrong, I haven't worn yoga pants for anything but Target runs in 12 years, but I get the whole pain and gain thing. I get the blood, sweat, and tears. I get pushing it to the limits and then going just a little farther.
This year has been a year of rigorous exercises of the mind and soul. Maybe it is a marathon or maybe it is bodybuilding, I am not sure which analogy makes more sense yet. (Leaning towards bodybuilding with my affinity towards self-tanning.) Nevertheless, this year has been a year of intense training and growing and stretching and pushing.
It has been such a difficult and heartbreaking year watching Luke regress and suffer.
It has been such a rewarding year because I can feel the results of the work that has been put in starting to pay off. I can feel our momentum starting to build.
BUT. Do not get it twisted. This is not a beautiful closure to 2016. I am not going to tie it in a nice little bow for you and fade into the sunset.
I am not in a great place presently.
I am tired. I am hard. I am cold.
I am so over preparing and training. I am tired of the same workout. I am tired of the same schedule. I am tired of the same challenges. I am over it.
I am so ready to put this year in to action. I am ready to get this show on the road.
It is time to take all these lessons and heartaches and hurdles and go DO.
I'm not an idiot either. I know that this fight isn't the end of my training schedule. I know that this surgery isn't going to cure Luke. Luke has Tuberous Sclerosis. It is a genetic disease. He has other tubers. The seizures will come back.
So the training schedule may change, but it never goes away.
We don't get to stop working out. Just like those nuts on the treadmill. They aren't finished when they get to a size 2. Its never over. Their routine never gets easy.
"Once they are potty trained, our lives will be so much easier."
"Once I stop breastfeeding, life will be so much better." (That one is actually true... i know, I am a jerk).
"Once they can talk, they will be much better behaved."
And then it happens, they eat, talk, pee, (if you are lucky) and you wait for the relief... it doesn't come because all of a sudden life is tough again for a completely different reason. A new challenge presents itself.
We are never done. It is never over. The routine never gets easy. It just changes.
"Done" isn't an actual thing that you get to be.
"It's always something..."
Yeah, stoooopid, thank goodness it is always something. All that means is you are lucky enough to get to keep breathing and loving and fighting and growing.
Results are wonderful. They are stepping stones to new adventures (corny) or challenges. But they are like the Olympic games. They are exciting and inspiring and moving and special. I love an overly necessary celebration as much as the next guy, but lets give a nod to Tuesday, shall we? Let's throw some respect to the sleepless nights and fevers and medicine changes and emails and blood tests and stitches and therapy. You got to do the work because you love it. You have to love the process, even Tuesdays. The process is where we spent 99% of our life.
But my 1% is coming rapidly. Next week we get to do something with the momentum of this year. I am ready for December 8 when we will get another 72 hour EEG reading to confirm Luke's seizures are still coming from one tuber. I am ready for December 13 when we have laser surgery to remove that S.O.B/ tuber from my 3 years old's head. I am ready for 2017 when we will find a home and start preschool and see what Luke's TS will look like without that nasty tuber jacking everything up.
But mostly, I am ready for today..
We are promised nothing. We are owed nothing. Every day we are here is a gift (so corny) even the ones that knock you to the ground. That is why I plan on rolling in to Houston in a gray sweat shirt/ swaet pant combo and a black toboggan. You can knock us down. Shoot, you can knock us out. But we don't stay down for long. We are champions of the everyday.
Ain't nothing wrong with going down. It's staying down that's wrong.
Ok... so I am a liar.
Not in a compulsive "that girl we all knew in high school, if you break up with me I am automatically pregnant" kind of way. But in more of a "I know that your husband is cheating on you, but I don't know if I should just mind my business because you may already really know but not want to talk about it" kind of way. Or like a "your ten year old son keeps dropping subtle questions about Santa, but you plan on squeezing out one more year of innocence if possible because I don't want my baby to grow up" kind of way.
If it wouldn't make things more complicated in a few weeks, I wouldn't even tell you this part of the story.
I would keep the lie to myself.
Like a protective parent dodging the questions of Santa, I was going to gamble the odds of omission and just keep the whole story from you. But, selfishly, I don't want to have to have this talk with you and crush your spirits so close to the holidays and while we are in the trenches of Houston.
Just a quick recap before we get to the part I left out..
We went to Houston for preop monitoring to get control of the seizures that have ran our lives for years.
Everything pointed to the tuber in the right parietal lobe.
Everything lined up.
Everything made sense.
And then we came home.
We were tired, and scared, and Luke was regressing by the day.
We made some big med changes.
Some things got better with the change in meds. Mostly, Luke could sit and stand and hold his head up. He started to laugh and smile and kiss and hug. We could see him again through the fog.
Some terrible things happened too with the med changes. Mostly, Luke no longer sleeps. Oh, I am sorry. I don't want to be dramatic. He has slept through the night 4 times since we have been back. And I don't mean "like" four times... I mean literally four full nights of sleep in 2 months. And it's not like he is up to get a drink of water and a hug. Dude is up for normally 3-6 hours at a time. There is not an under eye serum on the planet that fixes that.
And something seemingly indifferent happened too when we changed the meds. Luke's seizures shifted from his left side being more tense to his right side. The seizures still look the same for the most part, but they have shifted sides.
So here is the fine print buried in the footnotes...
The shift is not good news. It is confusing news. It is curious news. It is concerning news.
Why? Why does this complicate the plan? It seemed so clear and clean and simple. We had an answer. It was glaringly obvious, right?
Well. We did. And then this tiny shift happened and it adds an asterisks to the whole "clear and simple" plan.
The way your seizures look on the outside, communicates to doctors what is going on the inside of your brain. Seizures normally begin on one side and show outwardly on the opposite side. If you told a neurologist, that didn't know Luke, that he was seizing on his right side, they would say that the seizures were probably starting with a tuber that was on the left side of his brain..
There is the problem.
Luke's tuber. The one. The "clear" problem is on his right side.
The doctors in Houston feel it is most likely just some disruption with the med changes, but it could mean something has changed.
This is TSC we are talking about here. There are no rules with this disease. Things don't have to make sense. It's the Wild, Wild West. We leave nothing to assumption, especially before brain surgery.
So we will go down for another EEG reading a week before the surgery on Dec. 7 to confirm and affirm and hope and pray that the data that we collected a few weeks ago is still valid and that all the activity is still coming from the bad boy in the right parietal lobe. We hope he is still the culprit.
If the EEG shows us the seizures are still coming from the right parietal tuber (I feel like I need to name him) yet again, the plan is still on.
Decemeber 13- Tuber out. Monitor. Check-up. Home hopefully around Dec. 21.
If there is more going on, or something has changed from where his seizures are beginning, it is a completely different ballgame. I have like 15 scenarios that they gave me, but I am going to just stop there. One day at a time sister...
Even though I am an admitted liar, the last post is true.
The doctors are shocked and excited about the clear data they collected from Luke's study. They feel very certain that the EEG in December will support what we found a few weeks ago. They are very confident that no matter what we find in a few weeks, the tuber in the right parietal lobe needs to come out. They are making a list and checking it twice. No complaints here. Of all the times to be overly thorough, before your child's second brain surgery, is as good of time as any.
So you don't have to share the post like crazy. We can continue to be happy and excited and relieved there is 'finally an answer that is going to fix Luke', but we know there is more to it.
There is always more to it when it comes to this stupid disease. There is always more to it when it comes to life. We all have our lies, our fine print that we hide to protect those who are rooting for us. To give a break to those who are hungry for something positive and hopeful and good.
So don't tell them yet. We will just keep this to ourselves. Some lies are good for everyone. I can't wait to lie to Sam and bring a little magic into his life.
I can't wait for him to come down the stairs, his eyes like saucers and mouth hanging open. I can't wait to tell him that reindeer fly and elves make toys and Santa is watching... all those lies I have never got to tell Luke. I will show him the half eaten cookies. We will hang up our stockings. We will put carrots and oatmeal in the front yard on Christmas Eve.
I will smile and cry and try my hardest to soak every bit of beauty from these moments because I know they are fleeting. I will suck down my seventh cup of coffee and pretend like I haven't been up all night, anything I can do to protect the innocence as long as I can from the fine print of life.
Because some lies are worth it.
Listen buddy. We gave it a try. We really did. We tried to make it work, but you just don't seem to want our help. We've tried therapy. We've tried Meds. We've tried prayer and begging and CBD oil and diets. You just won't change.
And you know, maybe it's not that you won't...maybe you can't. Maybe you are just wired to cause havoc and pain and confusion and delay (been watching too much Thomas the Train). I just can't try to figure you out anymore. But now I am relieved to know I no longer have to try.
It's over, tuber. You've got to go.You hid behind the chaos for long enough, but you have finally shown yourself and now we all know. We know it wasn't our fault. We know it wasn't because we should have gone up on Vimpat or down on Afitinor. We know it wasn't because we quit the diet or we didn't have get enough early intervention. It wasn't the Depatoke, or Sabril, or Onfi, or white count, or infection, or stress.
It wasn't me.
It was you.
And it is time for you to go.
We went to Houston looking for tuber-S, more than one, that needed to be removed to end the seizures we have been fighting. We had told ourselves it would probably be messy and multiple. We accepted complicated as the norm a long time ago.
But that,my friend, is not the theme of this chapter. I mean, other than the fact this is brain surgery and not guaranteed and likely to have to be repeated in the future, other than that, the culprit is clear. The answer came easy-ish...for once.
When we were in the EMU at Texas Children's Hospital a few weeks ago the EEG collected 17 seizures in 46 hours. The doctors had told us that Luke was a show off and an overachiever. This was one of those weird times in our story when we got excited for seizures to happen because that meant that we were compiling every bit of data possible for the doctors. The goal for the stay was to capture about 4-5 seizures. We got 17, and we even were discharged a day early. Every seizure, except for one, came, very clearly, from the right parietal lobe. As the doctor relayed me that 16, not 17, came clearly from one spot, her excitement and explanation seemed to muffle as my mind started to zoom in to that one lone seizure she hadn't spoken for yet.
"And the 17th? Where did that seizure come from?" I asked waiting to be introduced to the supporting antagonist in this season of my weird Lifetime movie life.
"Oh, we think it came from the same tuber, it just wasn't as clear on the EEG because he was sleeping when it started."
"DANG GIRL! Why'd you do that to me?"
Dang girl is not normally something I yell at a neurologist who is briefing me on the pre-op brain surgery plan for my three year old, but I felt justified. She had me full on dangling in the dark place for 15-20 solid seconds.
So all the seizures they captured on the EEG came from the bad apple, that jerk tuber in my baby boy's brain.
At that point I was ready to pack the car, but I know that this wasn't the only data that they collected or the only data needed for a clear and effective plan
So Dr. Coorg went on to explain....
Results from ALL the other tests (MRI, PET, CT, Functional MRI) came back with results pointing to the same tuber, right parietal, right parietal, right parietal. Every test.
Even more, Dr. Curry seemed much less/ not really concerned about the location of the tuber relative to the location of Luke's left hand motor track. Weighing the risk of possible paralysis seems no longer a decision we will have to make.
And then, to just really send the Lifetime movie into the over the top gag me adorableness, they are pretty sure that they can get the whole tuber out with the laser.
Yeah. For real. No open brain craniotomoy. Little hole. Ablate the tuber. Put a band-aid on the hole. Come home.
So, that is 100% NOT the timeline and that is ridiculously oversimplified, but come on. This lowers the risk of infection and scar issue and swelling. This is the procedure they prefer to be done on every patient if possible. Many times, the location and size of the tuber makes that impossible. But not in our case. That bad boy is right there, Teed up, ready to get gone.
We leave for Houston December 7 and the surgery is scheduled for December 13. It is on.
I have been obsessing and dreaming about everything being better when you are finally gone.
And soon you finally will.
And I know that everything won't be perfect. There are scars left behind to heal. There is lost time to make up for. There is a person in there to cultivate and grow without being knocked down with every step forward.
This tuber. This thing. This growth in Luke's brain. We have been waiting and searching and trying for so long to control it and soon it will be out. Everything that Luke can do or can't do or won't do orbits constantly around these seizures.
It is the tubers fault. It is the seizures fault. These have been the mantras we have lived by for years.
They are going to be gone soon. We are going to be left with one tired, yet resilient brain. We are going to be left with Luke. I can't wait to meet him. I can't wait to get to work and take even a few baby steps forward in a row without a giant leap backwards.
I know it won't be perfect. I know it will be hard. But just like any healthy relationship, doing hard work with people fighting with you, not against you, is a reward on its own without even considering the outcome. Meds will work differently. Therapy will work differently. School, relationships, routines, toys, food, sleep... all these things will work differently once the tuber is out. We know Luke. We have seen his heart, but we are getting ready to meet him all over again without a seizure corrupting his development.
You know, I used to hate the movie The Breakup. I didn't get it. Why is it ever good to have a comedy end with two people walking away from each other letting go. Tuber, I get it now. I get the movie. This IS a happy ending, us parting ways. You have taken enough of our time and energy and money and tears. I wish I could say that we will both be better off. But honestly, I really don't care about you. We will be better and stronger and healthier and happier. You? You can go back to H-E-Double Hockey sticks, where you came from. You can join the floating carbon matter in space. I really don't care, just get out of my baby and get out of our lives.
With the build up to surgery, it is scary to think what happens after... but that is where cliches are a beautiful thing. One day at a time sister. So right now, it is time to turn on Kelly Clarkson/ Alanis Morissette, throw up with bird, get mad, get strong, and tell that tuber to shuffle on down the road. We are moving on. We are taking back our life.
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!
Hope is such a fleeting feeling. One second you're so filled with it and the next, you're deflated. When you feel for a moment that hope is gone, you turn a corner and are back on top of the Hope Roller coaster. The roller coaster that makes you feel naive when you have too much and like a martyr when you don't have enough.
Thursday was a 'top of the roller coaster' kind of day. We got him hooked up to the EEG and Luke did what he was supposed to do. He seized, a lot. He showed off every type of episode we questioned. He made sure it was quite clear why we were here and why we needed help.
Thursday night was rough, but it was felt purposeful and helpful for it to be so bad. I was actually relieved that it was a bad night. I knew that the toughness of it would provide answers. It was so nice for the silver lining to be right there, probes attached to his head wrapped in gauze. We were capturing this information to help Luke find some relief.
Still so hopeful.
Friday morning the roller coaster took us through the tunnel and upside-down. The doctors came in to share that things were as complicated in Luke's brain as we had suspected. So, Luke is hooked up to an EEG. These are the probes you see attached to his scalp which monitors his brain waves. We are here to monitor what Luke's brain looks like when it is seizing, to determine what is a seizure and what is not, and to determine where the seizure activity is coming from. Another thing we are looking at is Luke's brain when he is NOT seizing. Luke's brain waves have always been a little slower than typical. This is either the cause or the effect of his developmental delay. They go hand in hand. Other than that, Luke's "background", or his brain when it is not seizing, has up until now looked pretty good with only one area, the right frontal lobe that has seemed irritated.
This is where we went barreling downhill today. This is where we needed a barf bag.
Luke's 'background' today, his activity in his brain when he is not seizing, is not good. You know what, I am going to go ahead and say it is just plain bad. It is chaotic and irritated. This EEG was much worse than the one 20 months ago. Not one area like before, but. ALL areas are hot spots for potential seizures. ALL areas of his brain are firing abnormal activity, and they are firing off a lot. The doctor said they looked at the waves about 10 seconds at a time and 9 of the seconds had abnormal activity firing from parts of his brain. So it is going to be a lot harder for the epileptologist to determine the area that is causing the seizures because the background, the parts that are supposed to be normal and calm, are freaking out. The waters are very muddy.
But, even more telling about the abnormal EEG, is what it means concerning Luke's development. His brain is so chaotic, No wonder the child is regressing the way that he is. His brain is in a constant battle with itself. There are so many detours and road blocks that the normal development, language, walking, reasoning, is so beyond difficult to happen. This part, is most likely not fixed with the surgery. The surgery is to help with the seizures, but this background, this chaos is going to be a different battle all together.
Our hope was for a clear answer, a clear problem area that could be removed and the rest of the brain could get back to normal. That one bad part of the brain that was ruining the party for everyone else, that idea seemed to whizz past us and around the corner out of sight. That's why there are seat belts on roller coasters. Even when you can see the turn ahead, even when you know it's coming, it still sends takes your breath away, it sends you flying.
The conversation with the doctors, getting the 'bad news' broken to us, sent mom and I flying all the way back to 'that day'. 'That day', three years ago, when we learned what TS was. 'That day' we learned TS was now our life and the life of our baby. That day, however, was also full of hope. TS is a spectrum disease. There was no way to know 'what Luke would be like'. The doctors had no way of determining how severe his case was. So, I decided to take it one day at a time.
That EEG reading we saw today, took me out of the present and sent me flying back to that day we received the diagnosis. I went back in time to that day. I broke the bad news to me back then. A new mommy, scared and ignorant and innocent. I told me what the next years would hold. The meds, the therapy, the roller coaster of hope and disappointment. I told me that my baby would be lying in the same kind of crib three years later. Still unable to talk, unable to walk, unable to feed himself.
I told me what TS was really like.
So I went to the dark side for a visit today. I mourned the loss of normal for the 500th time. I let myself deflate. I let myself play the narrative out in my mind of what things will look like when Luke gets bigger and stronger. I went there even though I work so hard to stay in the moment because every once and a while, you have to. The pixie dust only gets you through so much. Sometimes, you just have to brace yourself for the drop and free fall.
And then it was time to cut that crap out. I caught my breath and ordered my cart to get it's butt back up the hill.
Our story didn't end that day of diagnosis, three years ago, and it isn't ending today. Our story is not over. You already know that I hate weird indie movies that end abruptly with no answers. No way, not happening here. It is still early in this odyssey. Hope is not gone. It is not over for us. Surgery, while complex and complicated, is still a possibility. An hour ago we added 20 more probes (that's a total of 50) on to Luke's head because the doctor already feels she is getting closer to narrowing it down a few areas that could be the culprit for the most dangerous seizures he has.
The fight continues. But there is also a moment to stop and process the reality of the narrative. It is time to stop the fight for a second and let in acceptance and peace for what will be and what is. This, right now, where we are, this is meant for us. Complete healing may not be in our cards. It may not be how this story is supposed to unfold. But that won't make our story a tragedy. It doesn't make us get off the roller coaster. Because, while we will still get answers and a plan from this trip, we have also gotten the unexpected. An extended family, warriors, and team who is ready to love and accept Luke no matter what his EEG looks like. Luke is still the main character in this crazy fairy tale and no matter what happens he is still our hero.
I know we are not alone. Your prayers and gifts and messages and care packages and texts and cards and calls are dragging my cart back up the hill. I know that our goal now is the same as it was before we got here. i know you know this is not how this Jacked-up Fairy Tale is going to end. I know we won't stop telling the story until we get to our own version of Happily Ever After.
"My horoscope warned me about traveling in September. I'm sorry. This is my fault. Scorpios and travel right now, they just don't mix."
-Patty Smith (Mom/ Nana)
Some repercussions of mom's bad universal juju would be a fuel tank blowing up on Interstate 65S as we traveled to the airport. Another example would be that I got tagged through security and when they gave me my bags back, they did not give me my laptop. (I later heard, "Would the idiot who left their laptop in security please return to get it.") But here is why it is important to travel with mom, even when the stars tell her not to. Everything is a little more complicated, but everything is a little more fun. How could anyone say that changing the diaper of a giant 3 year old in an airplane bathroom with a "changing table" that was literally a leftover tray table that they installed over the toilet, how could that, end with peeing your own pants laughing? I felt like Chris Farley in Tommy Boy. People who make you feel like it's ok to laugh during stress/ pain/ feces are worth the chaos. They are worth the hurricane wreckage left in their path.
When you are half Italian and half Irish, there are just some things that are beyond your control... mom has a High Blood Pressure personality, if that is a real thing. Go big or go home. In or out. Black or white. She forces people to care. She forces people to know. She forces people to laugh. I love that aggressive love.
So we barreled our way through the airport with a trail of Pixie dust mixed with just a little Cortisol, no, I'm going to say a lot, flying behind us. It was like they stuck the stress hormone and glitter in the sprinkler system and someone pulled the fire alarm. However, the logistics of wheelchairs and car seats and bags aren't that bad when you aren't trying to act like you know what you are doing and you have the cutest dude on the planet with you. People want to help.
We got settled in to the plane and within 5 minutes, the man behind us was patting Luke's head, telling him he was proud of him and the stewardess was in love. We got smuggled extra cookies, Sprite, and blankets.
The poop escapades began about 30 minutes in to the flight, but I have to take a little responsibility for that with the amount of fig bars and apple juice I was shoving in to his face to try to keep him chewing and sucking so his ears wouldn't pop. The only other part that I really need to think of a solution to would be his Larry Long Legs. I literally laid on his legs the entire flight to keep him from launching the poor lady in front of us into the cockpit. Mom continued to send up bottles, toys, candy through the stewardess who was now our devout gopher and Luke's personal assistant. As we left the flight people stopped to tell Luke what a good boy he was and that he was coming to a good place to get some help. How did the whole back end of the plane know about Luke and add him to their prayer list? You got it, Hurricane Patty.
I could have somehow pulled this trip off alone. I would have asked and paid a lot for help. My room would not look like the aftermaths of a natural disaster. I would know where my room key was. But why? Who would go get Luke French Toast sticks. Who would get me the biggest Pumpkin Spice Latte ever created? Who would have French fries and a cheeseburger on my nightstand when I got out of the shower? Who would have taken Luke on a walk to see the big trucks? Who would have almost missed the flight to go find milk for the bottle? Mommies never stop driving us crazy and they never stop saving the day. They never stop fighting for us and with us.
So I get to experience Houston's hope with a hurricane and a rainbow following behind.
Still dancing in the rain, even in Texas.
So a long time ago, my emotions made a choice on my behalf. They shut down. They shut it all off...
I couldn't really deal with what was going on with me and mine, but even more, I couldn't deal with what was going on around me, outside of my world. It seemed unbearable to process: his seizures, his meds, his plateaued development, so... I didn't. I didn't process anything, really. I stopped thinking about how I felt about all of it.
The shut down was involuntary at first. A wall was starting to be built and then, as it went up, I began to feel better and safer. That's when I made a decision to shut it all the way off. The wall building continued and I became the foreman.
I told myself I was doing it because it was the right thing to do. I wanted to protect myself from enormity of it all so I could then care for those around me. I couldn't be the one to fall apart. I didn't have that luxury. I wanted to protect my friends and family and coworkers from the misguided pain of my true reality. I didn't want to accidentally unload on someone and decapitate the innocent who was just trying to reach out. I didn't want to give people the 30 second 'elevator pitch' of what was going on with my baby, my Luke. Sharing my story while passing in the cereal aisle gives people just enough information to almost be dangerous. Why would I do that, set someone up to be unknowingly hurtful?
I was just protecting everyone else, right?
I had convinced myself that this was the humble and noble thing to do.
But the truth is, I was scared. Or maybe, actually, I was confused. Why wasn't I a wreck? Could I really build a wall tall enough to keep everything out? Who am I, Donald Trump? For a while, I actually just waited for the emotional breakdown to barrel through the wall like The Kool-aid Man. Everyday that the breakdown didn't come, I told myself it may come tomorrow and if it did, no one would fault me for it. But it never did. The magnitude of having a child with a genetic disease never felt unbearable to me because I wasn't feeling much of anything. So where were these emotions going? They had to be going somewhere. The longer I went without breaking down the more fearful I became of the storm gaining momentum. While time is supposed to heal, the longer I was in my world, behind the wall, the more terrified I became of my inability actually to deal with or face this reality. So then, the taller and thicker and stronger my wall became. I didn't breakdown because I physically couldn't.
I am strong because I am numb and go into the world to share my life with the ones I love. I talk to them. They ask how I am and where ya been. I answer. Then I hear my life coming out of my mouth, but it's like I hear it for the first time. As it hits their ears, I see my life on their face. My life, my morning, my afternoon, my night, rolls in like Eeyore and his rain cloud and sucks the color from their face. And then they realize that it is their turn to respond. Their mouth is still open, but nothing comes out.
Most people prepare on the way to sad events. Funerals, for example, have a script we can follow if we draw a blank. We can be sorry. They can be in a better place. Their pain can be over. We can start a meal train and shower them with casseroles. But this. Sick kids. Chronic, genetic disease. These do not have scripts. There are no safe phrases to fall back on that come easily to your mind.
Before people even try, I throw them a life raft and let them escape safely from the conversation, but, in doing that, I have to lie and say I know in my heart that it will all be okay. You both walk away relieved it is over. Your dismount, however wobbly the landing, had a very high starting score based on difficulty, so you feel it was a relative victory.
It pained me to bring my pain to others. So, I stopped talking and sharing. I didn't know HOW to do it. It was very important for me to be honest, but also, not sound negative or whiny. I couldn't pull that off, so I stopped trying. The wall gets taller.
But REALLY, also, in full disclosure since now, apparently, this is my diary and not a blog about Luke, I didn't talk and share and reach out because it didn't matter. It didn't matter that you knew someone that once had seizures. I didn't matter that your son didn't talk until he was three. It didn't matter that medical marijuana worked for your co-worker's sister's kid. It didn't matter because, in the end, Luke would still be sick and, for some really jacked up reason, I would be mad at you. So thaaat sucked. Being angry with people for caring about me? For having healthy kids? For trying to understand or relate? So guess what... taller, stronger, wider.
I stopped listening to music. I stopped reading. I stopped checking Facebook. I blocked people who seemed toooo happy. Stupid liars, I thought. And then... one day, He shifted the wind and I woke up from the haze. I missed who I was, but even more, I missed who I was supposed to become when Luke was given to me. And just like that, the big, tall wall came tumbling down like a house of cards. With one small breeze, all the work, all the building, all armor I wore to protect myself, was gone. It was just me. Open. Vulnerable. Exposed. But it was ok. I didn't need any of it anymore. I wasn't afraid.
And here I am, ready to tell my story and ready for my story to be shared. I am ready for people to know that it’s hard. I am ready for people who don’t even know us to keep us in their prayers. I am ready to be ok with sounding negative when it is just too hard to find the silver lining. I am ready to sound selfish when I write an entire blog about myself on my son's website. Luke's story doesn't need to be hoarded or protected. Luke's story is mine and yours to share. He reminds us that Cheerios fix everything and that strep isn't really that bad. He reminds us to laugh and kiss and dance even through the pain. We are all in this together. We are all just trying to figure out how we fit in this life experience. And we all want to know what the heck we are supposed to be doing with ourselves while we are here. No one has it figured out. That is the beauty of it all. Whether you speak to the Lord above or to the mountains or to the universe, I think we can all agree that we have an expiration date. Our time here is brief. So while the days can be long and the nights even longer, life itself is so short. We do not belong to this world. We are here on a lease. Some of us are just lucky enough to be leasing an angel.
You know when you start shopping for Christmas in September and you have convinced yourself that you have it all together and it is going to be like, the best holiday ever? And then you find yourself at Wal-Mart crying in the aisles on December 23, thinking, "How. Did. This. Happen?" There is such thing as too much time to prepare. You can't pack your toothbrush a week before you leave. Some things have to be figured out in the moment or even after. For a person who is desperately trying to grasp the illusion of some sort of control in this chaotic time, waiting is not a possibility.
So, what have I been doing to "get ready" for Luke's pre brain surgery adventure. Well, yesterday, for example, I called the financial counselor at Texas Children's Hospital to discuss prior authorizations and Medicaid choices. Her annoyance with my questions was beyond apparent. So, I apologized for bothering her on a Friday afternoon and getting on her nerves with my obvious ignorance of the topic at hand and explained that I just needed help to understand this intricate process. You see, I have a small case of Post Traumatic Insurance Screw-Up from Luke's last brain surgery when the hospital lost paperwork and we ended up with some surprise bills. (Does anyone else HATE the word suRprise. WHAT is that 'r' doing. I mean, I know there are two in the word. But I have no beef with the second. It makes sense. I'm cool with it, but that first 'r' gets me every time.) So, anyway, my trust is a little shaky in the billing department. She assured me that she and the insurance companies would take care of it and that "parents don't normally get involved in these authorizations". Well, maybe not most parents, but unfortunately, Patanya, I have your direct line now. I am going to be versed in writing prior auths (thats what we call it in the insurance business) by the end of this, with your help.
So, this is what happens when you book my child for a pre-surgery appointment three months in advance. I'm going to be all up in it, sister.
In my defense, it is genetic. Mom has multiple contacts at the hotel. She has a wheelchair accessible shuttle coming to pick us up from the airport. And she is now best friends with the special needs flight coordinator, Kim, at United. They shared stories of their grandkids and cried together for 35 minutes.
I know there are innocent bystanders in my wake, but it feels good to fill this stagnant, painful waiting with some 'doing' and some 'sharing'. If we are going to fly across the country, or at least to the bottom of it, I want to know, maybe like, or possibly even trust the people who are going to be a part of his brain surgery. Right now, I am just in the business to force those who have to be involved, to care about my son just a liiiittle bit more than everyone else. I want them to work just a liiiittle harder for him. I want them to be just a liiiitle more precise/ thoughtful/ careful/ patient. What else are you supposed to do when you lift it up? When you hand it over to the best doctors in the world? Sit there and wait.... I am pretty sure God delegated this task to me. I'm pretty sure he is cool with me doing this part for him. My principal, at the school I teach, always says, "When we all do a little, no one has to do a lot." Just helping out down here.
These people go to work everyday. They do their job. The answer calls of crazy parents. They take blood from screaming kids. They handle baggage of tired, traveling families. I want them to know our story. I want them to fall in love with Luke I want them to stop and notice his angel wings. I want them to care.
We know what it feels like to get in the zone of our jobs. We know the people who make our jobs feel like work and we know the people who remind us why we started doing whatever it is we do in the first place. I want Luke to be the boy that these people talk about at the dinner table with their family. The little boy who can't talk, but speaks to you. When I think about us getting on that plane, I visualize the map of the US. As the plane crosses the midwest into the great plains, a stream of pixie dust scatters across this great nation as Luke flies above it, touching all those in his path. Too much? Nah.
We leave for Houston on September 28. We will be admitted to the hospital the next morning where they will start this 3 day EEG. I am very anxious about what this will find. Luke has not been doing well as of late. He has run a fever, he hasn't been sleeping (God bless my parents), he has vomited, he has continued his subtle seizure activity, he has cried... a lot. As I type, I am becoming very anxious. I know there is more going on that we can't see with Luke's brain. The child can't stand anymore. He can't find his mouth to put the bottle into (I'm pretty sure it is supposed to say, "in which to put the bottle", but I just can't with that grammar yet). What I am more nervous about is what they may not find. What if.... No. No. I am not going to do this. When I start to 'go there' in my mind, I shake my head like an Etch-a-sketch. (HIT RESET: Faith. Trust. Breathe... Repeat) So, anywhoo, we will be in the hospital until the collect as many seizures as they need. They have us booked for 3 days, but we may be discharged sooner. And then we will commute from the hotel (it is literally across the street, quit being dramatic, Steph) to the hospital for the remainder of his appointments and tests.
I guess the main question I keep getting (mostly over and over again from my mom) would be, "Is there a chance they can just keep us down there based on what they see and just do the surgery while we are there?" No. They are going to collect as much data as they can from Luke's tests and then sit down as a team and discuss the plan. I, personally, appreciate the thoughtfulness and collaboration behind determining which portion of Luke's brain to remove. I mean, come on, we have at least 7 teachers meetings every single year to prepare, discuss, and review how we will hand out and collect the testing materials for our state's standardized test. So I think I handle these doctors wanting to have a few extra meetings before they open up Luke's precious head.
It is incredibly painful to wait. Lucky for me, waiting is not something I do. I've got a story to share and pixie dust to spread.
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.
So, as stated in the previous post, Luke had seizure like activity Wednesday evening from about 2 in the afternoon until he went to bed that night. Thursday morning offered no relief. He was agitated, crying, and seemed to be continuing to have seizure like storms going on. He got a dose of Ativan at 9 and again at 11:30, but he still continued his discomfort and agitation, not the mention the increased amount of his normal seizures he was having. It almost seemed as if the Ativan was revving him up which is the complete opposite of what it is supposed to be doing. So, we are having seizure activity for almost 24 hours and his rescue med is not stopping his seizures, giving no comfort, and maybe even making him more uncomfortable.
I'm just going to hit the high points if you don't mind:
1. Got the call. Left work, headed to Cincinnati.
2. Went through ER to be admitted.
3. Received another does of Ativan (this time IV) through accessed port.
4. Became very/ more agitated.
5. Continued to have normal size seizures. Crying stopped.
6. Got moved up to floor.
7. Ate some graham crackers.
8. Have told the same story literally 14 times today (that is NO joke).
9. Have confirmed his home meds 5 times
10. That's it. No big changes tonight. Just waiting to hear from Dr. Franz about plan tomorrow.
11. Oh, and he has had 20 seizures today.
And, I'll be darned if I don't end this cranky little update with a sweet ray of sunshine. We got his blood work back and, based on my experience in hematology, his numbers look really good. Granted no one has come by to tell us that... dang it... I was doing so well. I'm about to go shower and watch some makeup tutorials on YouTube, that may help. Never mind, Luke just woke back up. Guess its a dry shampoo kind of trip.
Every sitcom has that episode that is needed to tell the story, but just isn't your favorite. I mean, you get why the writers put it in, but you won't view it again when you binge watch this winter. That'd be this blog I suppose. I gotta tell it, but if you are looking for it to come together in an inspirational greeting card ending, I ain'tcha girl this evening.
So, backstory... yes, things have changed enough in the past few days to have an actual backstory.
Luke started Vimpat, another seizure medication, this summer. He started to become wobbly and unbalanced before starting the Vimpat, around his birthday, but it has gotten progressively worse in the past few weeks. We have been racking our brains to decide if the Vimpat was causing the wobbliness or if it was the direction in which we were heading anyways due to the amount of seizures he was having and the area of his brain in which they were happening. That being said, we have seen no decrease in seizures since starting the Vimpat. His ''normal' seizures we see 3 to 7 times a day have not slowed down at all.
So with the combination of the possibility of increased balance issues and little to no seizure control, we decided to start to wean off the med and try yet another. That was two weeks ago.
Since then he has slowly started to develop these cluster types of jerky-twitchy- shocky (Sorry for using such technical language) seizure episodes and they have started to ramp up. At first, you could just notice a little eye twitch and a whine. That would maybe happen 3 times in 5 minutes. Next it changed to little shocks. Today, we saw at least 45 minutes of seizure activity. Now, I am not a mind reader. Luke was not hooked up to an EEG, but even after two large doses of Ativan, Luke was still agitated physically and mentally. We were very close to going to the hospital to get some rectal Diastat. (I know, I know, I emailed he clinic tonight to get a new script to have Diastat and Ativan at the house.. It has been so long since we needed something like that, they had expired) Honestly, we wouldn't have given him Diastat after two doses of Ativan anyways without being supervised. My plan A tonight, when the hospital became plan B, was give the second dose of Ativan and start asking in an affirmative tone (that is PC for 'yelling') "Give this child peace, Lord!" Ok, maybe I asked for peace for us all. At this point we had been dealing with some kind of awful for about three hours. Even Sam needed a little peace at that point. That may have been why it took a little longer, I did a bundle prayer for us all. Feel a little badly for raising my voice. I have been told Iam a little aggressive at times...
So Luke and Sam are peacefully sleeping and I am peacefully eating my emotions in a vat of popcorn.
No Danny Tanner ending tonight kiddos.
Spread some love and keep on dancing.
Cause some days, it is just weird to be positive.
Hospital twice in a week. Once for infusion and once for a check in with Franz.
We have had three nights in a row of inconsolable tears.
Seizures have gone from "normal" to full body electrocution to clusters of 10-15 jolts in a row.
He wants to get up, but he doesn't have the strength or balance.
He wants to suck his bottle but his motor skills can't find his mouth.
He wants to be held but not touched.
So, we went down on the Vimpat because it was messing with his balance. Is that the problem? We held the Afinitor for two days when we got his labs back last week because of his white count. Is that the problem? The infusion makes him run a fever and vomit and we have read about other side effects that go along with infusions such as migraines. Is that the problem? He was off the Afinitor for a month five weeks ago and it takes a long time to get out of body. Is that the problem? TSC is a moving target, always moving and changing. Is that the problem?
I know that this is just one (three) bad days in a row. I know Houston is just around the corner and we will have some more answers. I know Dr. Franz is the best TSC neurologist in the world. I know faith and fear cannot coexist. But some days it just feels weird or disrespectful to be in a good mood. It feels distasteful to laugh when there is this pain that you cannot save your child from. I will say, shopping the Dress and Dwell clothes boutique overstock sale last night did help. Getting away so you don't feel like an a-hole for smiling and getting excited about something trivial. Even if it was the sale of the century (seriously, everything was $10), is going shopping while your child is hurting irresponsible? I know the answer is no, but I also know that every parent knows this feeling. We all have this disgruntled person, either in real life or in our subconscious, that tells us somehow that what we are doing is not enough for our children. We aren't doing it right. We are selfish for going to dinner or work or school. We are reckless for spreading ourselves to thin to try to do it all.
Come on guys... we aren't.
We are the example to our kids of hard work and responsibility, but most of all we can show them that it isn't weird or rude to be happy when the wheels are falling off, it is freaking awesome. (And so are my new $10 velvet leggings.)
Mother of two amazing little boys, one who just happens to be a TS warrior.