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.
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.
Truckload of Fertilizer
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.
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.)
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.
to the ride or die
I know some people are probably sick of me blowing up their news feed with these updates, but I know there are others of you, Luke's Ride or Die clique who are like, "Oh my gosh... why hasn't she posted... what happened?!?!" Panic ensues. I got you. I'm here. We are all good.
So, let me say. Luke's bone marrow responded beautifully to the "white blood cell making" medicine, Neupogen, he took yesterday. He also never ran another fever the whole time in the hospital. His seizure count was T-9, W-7, R-3. We are all over the place with the amount and the intensity. These seem to be over and you can almost see a spark catch him. It will happen a few times at the end of the seizure and it really ticks him off. All to be expected with the amount his meds are changing right now, but not easier to watch. It makes things so much harder when you can't explain to him what is going on. When he cries after a seizure, is it because it hurts? Is he scared? Is he mad? Or is it a neurological response? He used to laugh before he had one and I'm pretty sure it wasn't because it tickled.
Luke actually started feeling so great last night that he only slept for about 3 hours. What did he do the other hundred hours you may ask... sing to the entire neurology floor. He had a party and demanded I come. He seems so much more vocal in the past few days. I am associating it with the reduction of Sabril, but we have so many moving parts right now it is hard to say. Needless to say, as soon as we got in the car he bailed on me. We are home and there is so much more to discuss. Preschool? Surgery? Medicaid? Blood? (nice word bank) But I am signing off tonight because the 3,000mg of caffeine that I have ingested in the past 72 hours did its job, but clocked out about 2 hours ago. It is done and so am I.
P. S. Thank you all so stinking much for the love, text, prayers, and support not only for Luke, but for the whole family. This was an unintended repercussion of this blog and it is really overwhelming.
our day in data
*No Fever * Slept through night
*Culture results- no bacterial infection
Side note of good news: Just found out we have been targeted for the Medicaid Waiver from the Bureau of Developmental Disabilities... finally!
The Cincinnati kid
Disclaimer: If you haven't read the blog below yet, read that one first. It will update you on yesterday and what lead us to where we are today, which is back in the hospital. I will probably be doing smaller updates, in the next few days with the amount of information coming in, so just make sure to always scroll down to make sure you read them in order.
So Luke woke up with a fever of 103 this morning at 4 am. We tried to get it down, but it was being stubborn at first and after an hour was only down to 102. Per instructions from the clinic we packed our cute little butts up and headed North around 6. He has been eating (graham crackers, so I'm not really sure if this counts) and drinking and laughing and singing all morning, but his blood work did look good yesterday and a fever isn't a good sign when you have 'no' white blood cells. So we got here and were admitted. They thought for a second about transferring us to hematology, but we are staying with neurology since the nurses on this floor love him and know him. We have blood cultures pulled, which will take 36-48 hours to develop, and some other labs. His port is accessed and we have started antibiotics. Poor guy was woken up to a catheter... Which I have decided is the WORST way to be woken up in any "Would You Rather" game. His labs actually just got in and his white blood count is still extremely low as well as his hemoglobin. The only stat that stuck with me was that his SEGs were 1, so if you are grasping at optimism, that is up from zero. Basically, things that are supposed to be low are high and things that are supposed to be high are low. We aren't sure now if things are out of whack because of the Afinitor throwing everything off or it's because he is fighting an infection. So... how long we going to be here. After lots of, "well first we have to see____" and "then we will watch____", the answer I walk away with is a week-ish. Will update again after we meet with hematologists.
Luke's seizures- 8 since 5:30 this morning. Most notably 3 in the past hour.
No witty closing now I am afraid. Just imagine it as one of those weird indi movies that just end and you are like... oh, ok. We are done here? Yup, for now.
Mother of two amazing little boys, one who just happens to be a TS warrior.