We have been blessed with witnessing a profound new beginning for Savanna after her first resection at 13 months of age. Today, God willing, we are expecting a new child to emerge from the operating room again as she undergoes her second resection. Like a person who has just put all their money on a winning horse, we have gone ‘all in’ for Savanna’s battle for Seizure freedom. This will be Savanna’s second resection as the first was incomplete due mainly to bleeding and respiratory issues during the first procedure. According to recent studies I have read, about 30% of persons having a resection surgery for FCD (Focal Cortical Dysplasia) regardless of the type, experience the incomplete resection. Many people experience the incomplete resections as a result of a seizure focus occupying a vital part of the brain, such as motor or occipital cortex, which when removed would produce a significant deficit, especially in older patients. The vast majority of patients develop seizures within 6 months according to recent studies. Savanna is in this category. Today we are attempting to complete the resection of the seizure focus in her brain.
Unfortunately for us, navigating this territory, the majority of the study data cohorts that have undergone surgical treatment for FCD are still very young. Yes, there exist wonderful, made-for-TV success stories, but there are equally as many less successful stories that won’t make the highlight reels of the mainstream media reports. You don’t hear much about these in lobby to put your child through the surgery. However, the odds simply put are this: 100% guarantee of seizures and moderate to severe developmental delays/retardation if we reject the surgical treatment – versus – a chance at seizure freedom or perhaps less frequent and/or severe seizures and possibly much better developmental outcomes. I have learned that quantifying the correlation between an accurate epilepsy diagnosis, successful complete resection, and long-term ultimate outcome, with respect to development and seizure freedom, is a difficult question faced by epileptologists and surgeons recommending surgery for an 18 month old child.
Right now, Savanna is experiencing many seizures per day, mostly electrographic. This means we don’t always know when she is having a seizure as she doesn’t present with the symptoms one might expect. She is occasionally having breakthrough complex partial seizures where we see the clinical aspects of her seizures. All of this is happening while her brain is growing and developing, which continues to inhibit or retard her ultimate outcome. This is difficult to imagine as you watch her learning to crawl and stand right now. People who don’t see her every day (and sometimes us) see her gaining new abilities over short periods of time and it all seems wonderful. To see her bunny hop crawl, smile, look directly at us, and actually reach for us are all miraculous moments in themselves. The truth can be difficult to explain, much less accept emotionally, with regard to her situation.
Savanna’s current state of developmental delay is about 9 months behind normal, and she is not developing at her optimal rate due to the disruption of the seizures and the abnormal focal activity. These partial seizures are not particularly dangerous or disruptive right now, but they will not get better or simply go away. The longer they are left uncontrolled, the greater likelihood that she will have seizures of different types in the future. More importantly, these partial seizures will likely worsen and become disruptive in the near future. To complicate matters, the drugs available for medical control of the seizures have their own set of negative side effects with respect to quality of life. Studies have shown that the earlier intervention with surgical treatments to drug resistant seizures such as Savanna has, the better the ultimate outcome.
As a parent of a child in this situation, it is a nightmare you can’t wake up from. The security that you have with the other typical children is not present with Savanna. You are always watching her. You always wonder as you see the odd eye movements, the odd hand or arm movements, the odd overall activity. It is like driving on foggy road, but the drive never ends and the fog never lifts. You just can’t see anything but what is directly in front of you. Sometimes, like today, you pull over to try to plot a new course to get out of the fog, but you don’t even know what lies just down the road a bit, much less on the other side of the mountain. Whereas with our other children, I feel I can see for miles. And, the view is wonderful.
This morning a team of anesthesiologists took our daughter away from us. Our hearts are filled anticipation and anxiousness. Savanna gets to begin the next season of her life, for better or worse. We desperately hope she gets to be one of the lucky 40% that can gain seizure freedom from life-altering epilepsy surgery. What we are hoping is that today, the old cliché proves true with respect to focally dysplastic brain tissue and quality of life: Sometimes, Less is More.
(Commentary by Rebecca) It’s difficult to articulate what it’s like to make this decision and then anticipate the day of surgery. I hoped and prayed that the moment the anesthesiologist wheeled Savanna away on the gurney, was not the last time I saw my daughter alive. Am I being dramatic? While we sit in the family waiting room, I pray the answer to that question is an emphatic yes. The likelihood of death during surgery is rare, but there are many things that can go wrong. I’ve caught myself appreciating so many moments over the past few weeks. I stopping often to capture a mental picture of a moment, a smile, an otherwise typical snuggle, a view of something she’s doing, the smell of her breath, or the tiny freckle on her right butt cheek.
I know that while she’s under, God is holding her. I told her to tell Him, to thank Him for this time He’s given us with her. Thank Him for choosing us to be her mommy and daddy. As hard as this has been, I’m so lucky and happy to be her mommy. It’s not just the fear of losing her that scares us today. We have such hope and such fear of the outcome. It’s possible that the road that lies ahead may be harder than the one we’ve travelled so far. We will travel it together, regardless. And for now, we continue to hope and pray and wait to see her and hold her. (commentary Rebecca)
Around Savanna, life goes on. Dishes have to be washed, laundry is never ending, and keeping the house even a little in order is a daily challenge that must be accomplished along with Savanna’s care. Tristan is starting to understand a little about Savanna’s situation and increasingly aware of her needs around the house. One day he really wanted us to take a picture with her in the bathtub. He is only five so it was really sincere and innocent and touched our heart. One day, completely fed up with being in the house worried about Savanna becoming sick, I took off for a really neat park where the big kids could run around. It has a train theme, and a gentle-slope roller slide – which I convinced Tristan to try to ‘surf’. He did awesome and had a lot of fun doing it. I heard the other parents, tense with fear of falling, holding their hands over their mouths while they watched. I cheered him on from the background, and took pictures. He loved it, and so did I as a parent. That day, we lived in the ‘now’, and it felt great. with her care around the house during the week. Our family support group, Grandpa Squiz, Grandma Lou, and Mama Barbara made the trip to Houston to help with our big kids while we stay in the hospital. On Sunday, we had and Easter Egg hunt and the kids found lots of fun things Mommy had planned for him. And, the obligatory large chocolate Easter Bunny… yah!
-ken and rebecca
I am praying for Savanna today! I pray the surgery goes well and helps her to be seizure free. Please let us know if there is anything we can do to help in any way.
Second Baptist Church Cypress Campus
Thanks so much for your prayers. She is still on the operating table now, but will send an update tonight when she moves to the PICU.
I will be praying for seizure freedom or your sweet daughter! My heart breaks for these kids that deal with this. Your daughter and my son are on similar paths dealing with this rare disorder, my heart goes out to your family and I will be sending positive thoughts y’all’s way!
We are 9 hours and still waiting for surgery completion. I read your story (because at this moment, there is not much more I can do). I don’t know what to say. It brought tears to my eyes to read PJ’s story. As parent of similar child, I could feel the hopeless feeling you conveyed in your writing. We too have felt that. If you ever want to connect over the phone or in person, please let me know. I am touched by what you and your family have been through and are still facing.
I have been praying since last week for Savanna’s surgery today! Still praying for her. I so hope it all goes as desired! For us, Abby has not had a seizure in a month/four weeks! So I’m guessing the Trileptal is working. I am still not completely “OK” with things, but you know. I think once you see this in your child, you are never really OK again…Prayers to you and your baby girl.
Grateful to hear surgery went well. We will add our prayers for the best on going outcomes in the next weeks and months
Ken, you are amazing. Your complete grasp of every tiny detail of her condition and care astound me. Also, your ability to relay the technical information along with your emotional journey have been so comforting to all of us pulling for you guys from hundreds of miles away. I know it must be hard to see from so close and so easy to wonder if your decisions are the right ones, but please know that from a distance there is no doubt. Savanna could not have a more capable parental team than you and Becky. We love you guys…GO SAVIE-D!!!!
You two are amazing parents to all your children. We love and pray for you. Keep us informed on her post-surgery progress!
Savanna is doing great now, but recovery has been a rough road this time around. Still in the PCIU as of Thursday, but headed to EMU soon. Can’t wait to be home. There are few things I like less than living in the Hospital…
Hello, I know this blog is old, but I’m wondering how Savanna is doing?
Yes, an update is long overdue. She is doing great!
Check out the video on this site, it’s our story in a nutshell.