Hear our battle cry...
The Dark Night
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.
The Fine Print
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.
Sweet Taste of freedom...
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!
The hurricane and the rainbow...
"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.
Faith, Trust, and Pixie Dust
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.
Open the Door
Last night you couldn't sleep. Tomorrow is your baby's first day of school. How are they going to act? Are they going to listen? Are they just bad for us? Will they try to sit on their teacher's lap? What if they are mean or don't make friends or are just terrible humans? What if I made them that way? Your mind is racing with tears rolling down your face. The chalkboard is downstairs for their picture "First Day of ___ grade".
In their room not far down the hall, they are thinking I hope my teacher is pretty. I wonder what I am having for lunch? What time is recess?
Kids are dumb.
You are borderline hyperventilating as you race to get them ready. You pray in the 3 hour car rider line that they will feel God with them today. You start peppering uplifting sayings that you saw on a Kardashians Instagram last night. "She slept with wolves without fear, for the wolves knew a lion was among them." You go on to say, "Remember that today babe when you are eating snack. You are the lion baby, you get it?" Ya, me neither. Start through the checklist...Shoes tied, You have your lunch box, Nana is going to pick you up this afternoon. Remember, BoogerButt is only a term of endearment used for your sister, don't call a new friend that today.
The door opens (you are anticipating the ending to Full House, "Couldn't have done it without you Danny Tanner") and they are gone.
They are fearless. We, on the other hand, have been jaded by life and problems. We know who "those girls" are in school and we don't want them messing with our daughters. Even worse, we don't want our daughters to BE those girls.
But they float above it. The storm may slow them down temporarily but their resilience seems abnormal. The door opens and they run through, leaving us in the dust.
Sometimes I feel so unlike other parents, but strangely enough, today I felt some parallels. Sure, my worry is different. Luke will not be starting school this fall due to his blood count and seizures, but nonetheless, I get it. You and I both stand at the door packing, making lists, making calls, buying crap they 'need', and staring at them and crying. We are doing the same things. We are thinking the same things. How can I protect you? Can I trust your brain/ heart/ soul to these other people that really don't breathe for you? Why can't you just stay my baby forever? I AM IN AWE OF YOU.
So the door that our family stands at "today" is not the car rider line to get to the first day of Kindergarten, but the line to do data collection at Texas Children's Hospital. But just like you, I stand at the door crying and so proud of my baby and probably just like your child, Luke stands at the door laughing, farting, and fearless ready to run through.
September 28- we will travel to Houston later in the day. We are on the fence about flying or driving. I have given both sides a LOT of thought and will let you know what we decide. Also, we have a few generous options about where we will stay. Don't know accommodations yet since we just got the call today.
September 29- October 2 Check in to the Epilepsy Monitoring Unit (EMU) for a 3 day EEG. This is what you see when you see kids with the electrodes on their heads wrapped up like a mummy. An EEG captures electrical activity in the brain. Epileptologist can look at an EEG and tell when a seizure is coming, when it is happening, or where they are coming from. Full disclosure, I 100% feel that I can read an EEG to the point that they turned off the computer screen in our room because I became borderline obsessed with reading them and was probably offending everyone around. by trying to tell them what was going on. But I was pretty good at it so I really think it was jealousy. Discharge is planned for October 2, but depending on the amount of seizures we collect, we may be able to leave early. Unfortunately, I think they may get what they need pretty quickly at the rate he has been going.
October 3-4 We have appointments in clinic. We are actually going to meet with Dr. Wiener and Dr. Koorg. Dr. Koorg will be our "Houston Dr. Franz". He won't change meds or anything, but he will oversee us on both of our stays. Dr. Wiener, as you know if you watched the video, is the man. He is the neurosurgeon. This man might as well be Prince (Rest in Peace). He is a gosh darn rock star in the world of epilepsy and is in the Rock and Roll Hall of Fame when it comes to TSC. And we get to meet them! (That exclamation mark is a true expression of how I feel. I know they are lame in general, but I need you to know how pumped I am to meet these men who have dedicated their life to such a rare illness)
Oct. 5 Luke will have his imagining. When I spoke with Marissa, the nurse who does the scheduling and intake for possible surgery candidates, she explained to me that they want as much information that they can pointing them to the area that is causing the seizures. In kids with TSC we are hoping this data points us to a tuber. Ok, so let me be real/ negative/ pessimistic/ ye of little faith-ish right now. There is a possibility that we do all this work and the seizures are coming from multiple spots or a scary/ dangerous to operate area of the brain. Then we may not be able to operate. (Prayer clarification: The traveling goes well and the seizures are coming from ONE area that is safe-ish to remove.) So we will have an MRI which will show us a lot but specifically where these stupid *CUSS WORD* tubers are in his brain. The next thing is amazing. It is called a functional MRI. The doctor who is doing this on Luke is pioneering this technology in the world. So they are going to take the MRI and they will lay zones on the image to show you which parts of the brain are in charge of what. Well wait a minute, my teacher friends may be thinking to themselves, I went to a Professional Development on the function of the brain and behavior, so I can skip over this part because the frontal lobe is in charge of impulsivity. I know the rest, too, but i don't want to be a show off... Well wait a little second before you drop the mic. Kids with TSC have brains that don't really care what is in your text book. The tubers are in the way of many pathways so the connections have to reroute and as we all know from our own rerouting experiences with Maps, the destination isn't always correct once we get all turned around. What that very sloppy analogy means is that because the tubers are in the way, the brain functions differently. Also, some of you may remember, Luke had a pretty significant chunk (this word seems insensitive, but what else do you say?) of his brain resected when he was 5 weeks old. So because of the plasticity of the brain at such a young age, the brain rewired itself to compensate for the missing parts. The younger you are the more resilient. This would be a great place to stop since I have come full circle with the resilience comment, but sorry, not done yet. He will also get a CT scan to check for calcium in the tubers and a MEG scan which measures magnetic activity and a PET scan. He will be sedated for all of this but the CT scan because that "literally takes 10 seconds". But he will be out for an hour and then will head back to the lodging that we decide upon.
October 6- Come home.
The door is open. I shed my tears. I am anxious and scared, but also prepared and so proud of my little warrior. I am ready to walk through. When I start to feel too scared to take the first step, I think about the hell he has gone through, always with a smile on his face. His strength and resilience keeps me in awe and motivated to walk through that door holding his hand, ready for the next adventure and ready to find him some relief.
Do you ever just fall to your knees, finally ready to hand it all over, but the words just don't come? What am I suppose to ask for? I mean isn't it obvious? How do you start? I do know that it helps to start with a compliment before you ask for something. OK. God, hey, great job on watermelon. I mean, I love it, my kids love it. I've really never met anyone who was like disgusted by it. I ate a whole watermelon every two days while pregnant with Luke. He is finally eating it again which is now adding a seventh item to his "I Will Consider Entertaining the Idea of Eating This" list. So bravo. Ok, so I think that was a strong start. Let's get into this... Maybe I am supposed to lift my head to the sky and like look up to heaven. I've seen them do this at church. It will help you hear better, I think it helps to look up... Man, my fan is dirty. I wonder if the Shark Professional Rocket Handheld vacuum is really that easy to use on fans. Who knew that this was a much needed demand of the everyday housewife, attachments to clean your fan? Well, I am clearly not as concerned about it as I should be. I bet that would change if I had that vacuum. I would have the cleanest fan ever.
Then my mind goes quiet, white, and I realize why the temporary obsession with the Shark Professional Rocket. It was on a loop in the hospital while we were on the floor. Funny how, what seems to be, an inconsequential background noise, ends up being a big part of the soundtrack without you realizing...
36 hours into our month long stay in at the hospital, my 3-week old had experienced CAT scans, MRIs, EEGs, EKGs, labs, and ultrasounds. The errands of tests had eerily slowed to a halt and we just sat. We sat until an army of interns, residents, fellows, and attendings all came in with their most composed and compassionate look they could muster. They had probably practiced in the mirror when they found out they were doing a rotation on the neurology floor. I could tell about halfway into the speech that the little girl in the back was going to remember this moment for the rest of her life. The time she gave a family this incredibly rare diagnosis. She and her boyfriend would talk about it at dinner and he would insist she get the chocolate brownie since she had such a rough day. You could tell that they were soaking in the lessons of bedside manner from the neurologist. It is good to get down on their level, look them in the eye. Use a calm, nurturing tone. Be thoughtful with your words. Remember, this is their child you are talking about. She kept talking but I was replaying the probable pep talk they had before and the debriefing after. I don’t know why but I really wanted to follow them out of the room to know how they thought it went. As she spoke, she leaned on the corner of the wall. It had a plastic corner-protector-thingy on it and it kept squeaking. Did she not notice or was she too nervous to stop her rocking? They had print-offs for us that they had surely read themselves too before entering. Giving us the diagnosis of Tuberous Sclerosis, a disease that affects one in 6,000 births and that has no cure, they were sure to tell us. After the news was broken to us, the doctor pulled up a chair and put her elbows to her knees. “We have a few options…”
After numerous medications were tried the topic of surgery began to creep into the conversation. At first I was offended at the nerve. I had only washed that little head with baby shampoo a handful of times. I hadn’t figured out which way to part his hair yet with that stubborn cowlick. The same cowlick that had made me worried if he would be made fun of a few weeks earlier. So now, this head, this perfect head, you are going to open? Yes. Because sometimes epilepsy happens because brain waves misfire and sometimes, like in Luke’s case, his seizures were coming from, what looked to be, a hot spot. This tuber in his left frontal lobe needed to come out. This tuber quickly became my enemy. I hated this tuber and, within hours, I wanted to go into Luke’s head myself and get that SOB out of my child. Once it was out, Luke would be better and we would go home and we would all laugh about this one day. WHAAAT? You had brain surgery? No way! I saw him up speaking at the ESPY’s about his rocky start but how he battled his setbacks and was a better golfer because of it. He thanked his mother for always fighting for him. We would both cry. I would give that silent smile/ wave that you do when you are mentioned in a speech and it would really be a beautiful night. Ok, so I am on board. Get the tuber out and we are going on the PGA tour in my retirement. I’m sure that they have amazing scholarship opportunities for a resilient and adorable young man.
So surgery was the answer. And for ten days after the surgery my dream really started to take hold. They got the tuber out. Luke stopped seizing. We held our breath for the first week but by day 10 we were back to tummy time and peek-a-boo when they started back up again. The first one I actually just started at. Am I seeing this? Is this happening? But they kept coming. And coming. And coming. By that weekend we were having 30 a day and the doctor’s told us there was nothing else they could do for us except put Luke in a Phenobarbital induced coma. We politely asked them for discharge papers and headed up the river.
It seems really selfish to learn a lesson from your baby’s brain surgery. It seems even more whacked to take said lesson from brain surgery #1 and apply it to impending brain surgery #2. But I am in the business of sucking every drop of growth and joy for every experience I have. Why the heck not? This storm is not going to pass. The last surgery didn't wrap everything up in a nice clean end of chapter and the next surgery we are considering will not either. I got sucked into a quick fix last time, into creating the narrative that I thought I wanted/ needed. (Award shows, cowlick problems) But I realized a long time ago that I can fight my tail off for my child, but I am not calling the shots. This surgery may help the seizures. His development may start to progress. But Luke has a genetic disorder. It is not giving up hope to accept that. God made him this way. I will not pray for Luke’s TSC to be cured because this is who God built him to be. It almost seems like I would be asking God to fix a mistake he made. And that doesn’t happen, right? So, asking for things to be different than they are seems like I am without faith. I want Luke’s seizures to stop. I hate them and they suck. But God knows that. My point is YOU can pray for Luke to get better, stop seizing, be cured, be normal. Actually, I would ask you to do that for me because I can’t. I can’t stay in that space of unease/ angst/ disappointment. I have had to transition to another place for a long-term stay. My prayer is different. I will pray for strength and wisdom and courage. I pray for acceptance of this beautifully messy life that I have unexpectedly been blessed with. I will pray that no matter what is thrown our way I will be strong, but more importantly, be kind.
You can pray for the storm to pass, and I will pray to learn to dance in the rain.
The surgery: daytime t.v. style
This is the best clip I have seen yet (cheesy as it may be) explaining the surgery that we are preparing for. See the blog post below for the explanation of how we got here...
Dr. Howard Weiner, as seen in the video, was named chief of neurosurgery in May of 2016. Texas Children's Hospital is ranked #2 nationally for neurology and neurosurgery. Dr. Weiner's clinical interests are refractory seizures (seizures that do not respond to medication) and Tuberous Sclerosis. Sounds like a pretty good fit!
Here we go...
The journey begins. I am going to begin by apologizing for the amount of times i say 'journey'. If you have met my mom, you will know I get it honestly.
Without getting into the entire week, I just want to practice being concise... OK, here goes the cliff notes. Luke's seizures have been gradually increasing and getting more intense for a while. He has gone to 3ish a day to 15ish a day and these bad boys were not playing around either. We upped his Afinitor (I will do a blog on his meds because it is a big piece to understand if you want the whole picture) hoping to get some seizure control but we went up too far. The only real side effect we see from the Afinitor is lowered immune function and mouth sores. Well we had both side effects like a mofo. He was up all night, not eating, drinking, walking... you get it.
We had the infusion scheduled for Friday, but Monday night was so rough that Cincinnati was able to get us in Tuesday afternoon. We got up there, got the infusion started, made some pretty drastic med changes, treated the mouth sores, and had the conversation. I have had these conversations before, the kind you know you will never forget what the other person was wearing, what was on tv, or the sound of the leads beeping in the background. Karen and Dr. Franz came by the floor to see us even though we didn't have an appointment. I was so shocked to see Dr. Franz that I hugged him. He is one of those people. His presence is safe and strong and peaceful. George Ross, the pastor at Northside Church, is the other person that has that. The room is warmer when they are there. So the conversation highlights... Sabril is a med that Luke has been on since he was 4 weeks old. It treats a special kind of seizures found in kids with TS called infantile spasms which Luke never had. This med, Dr. Franz explained, had done its job, kept away these IS and now was working against Luke and could be making him toxic. We cut the med by almost half and we would be monitored at the hospital to see how he handled it. Also, we decided to hold the Afinitor. The Afinitor keeps Luke from having 30 seizures a day. It is also works on his other organs to limit and shrink tuber development. It also suppresses Luke's immune system, thus the reason we get IVIG infusions. So, because the med slows Luke's body's ability to heal, we had to stop giving him the med so his mouth could get better faster. This is always scary for me. The last time we took him off the Afinitor for a while his seizures went through the roof. But its the only way for him to heal when he gets sick. Next topic, Vimpat. Vimpat is, really, just another seizure drug to try that they have had some success with in TS patience. Steve told me a statistic once (I'm going to make up the numbers a little) that stated your first seizure med has a 60% of working, the second a 30% chance, and by the time you get to fourth or fifth it has like a 2% chance. We could very easily be on #10. So we will try but the odds aren't great. Dr. Franz said the odds aren't as bad as winning the lottery. We have a shot this could work, a little or for a while. But this brings us to topic three of our impromptu meeting. Luke needs surgery. Surgery at Texas Children's Hospital is a go. We are going to make these changes in the meantime, but even if they work, Luke's seizures do not respond to meds willingly. We may have control for a while and they may even cut them in half, but when you start with 30 seizures a day, half still sucks.
Seizures suck inherently. There is nothing good about them, but we have even more of a sense of urgency because of these bastards. Luke has regressed. He was babbling, waving, even blowing kisses. All gone. We had him evaluated a few weeks ago and cognitively he is functioning at around a 8-10 month old. The other reason, obviously, is Luke's safety. When Luke has a seizure he falls... hard with no break to the fall. He wears a helmet, but that doesn't protect him completely. We have had to get stitches in his chin which has later gotten infected. It is a constant concern for us all and we have limited the amount that we experience out of fear and caution for Luke.
So, this is where we are. Just turned three, 15 seizures a day, sweet as can be, second surgery within the year.
Mother of two amazing little boys, one who just happens to be a TS warrior.