By Stephen C. Schultz
As a father, I never anticipated seeing and emotionally supporting my daughter through 50 seizures a day, for days on end. Each seizure brings with it a stiffened left arm and leg, convulsing motions, eyes rolling back to the left, and her head contorting to the right. Her breathing stops for the duration. The most harrowing aspect is that she remains conscious and aware of her surroundings. She can hear people talking, but her body simply does what it does. After 15 to 30 seconds of not breathing, a panic begins to set in. What if the seizure doesn’t stop? It’s a horrific experience to endure time and time again. It is nothing short of torture, with the emotional and psychological trauma that accompanies it.
There were four seizures in the car on the way to the emergency room, all within about 20 minutes. After 10 hours in the emergency room, she was admitted and immediately hooked up to an EEG. There was a computer screen displaying graphs and a video monitor with a camera so doctors and technicians could monitor her remotely. She even received a phone call from a mysterious person asking her questions as they monitored her seizure activity from afar.
As I sat in the gray vinyl chair next to her bed, my mind drifted back in time. My wife and I had been sitting on the sofa watching TV. The kids were in bed when there was a loud thud upstairs, right where Emma’s bedroom was. I hustled upstairs to see what was going on and found Emma on the floor, convulsing. I rushed over, got on the floor with her, and held her in my lap. She was 11 years old at the time.
And so began years of doctor visits, tests, and battles with insurance companies over medication approvals. There was advocating for her at school with teachers, doctor visits for stitches in her chin from falling, and moments like walking out onto center court during a high school volleyball match while a stunned and gasping crowd watched as her mother and I rubbed her back while she groggily came out of a seizure.
The frequency of seizure activity was generally one to two seizures a week, with occasional stretches of a week or two without seizures. While it was inconvenient and came with many physical and emotional side effects, she managed with resilience. Not perfectly, but she managed.
Now, in her early 20s, she lives somewhat independently across the street from us. She has an emotional support dog, a roommate, and a nice basement apartment she can call home. She works three days a week at the local recreation center’s front desk, smiling and greeting patrons as they come in.
This latest series of events has been unlike anything we’ve seen before. It started on Christmas Eve. At the dinner table, she started falling out of her chair, and I casually put my arm around her shoulder to hold her tight until the seizure subsided. Then, on New Year’s Day, I was cooking omelets in the kitchen while Emma sat at the island on a bar stool. We were making small talk when I looked up from the cutting board to see her leaning to her right, convulsing, and headed to the ground. I rushed around the corner of the island and lunged to the floor just in time to get my arms under her head and shoulders as she hit the floor. With the increase in activity, we called the doctor, who instructed us to get some bloodwork done.
On the morning of January 9th, as I was pulling out of the driveway, my wife called to tell me Emma needed to go to the emergency room. I drove to her apartment across the street, where my wife was already waiting, and we pulled Emma off the bed to help her to the car. Her rescue medication wasn’t stopping the seizures, and she was “clustering.”
She has been in the hospital since January 9th. A former high school athlete, she is now reduced to escorted walks around the hallway with physical therapists and nightly shots in her stomach to prevent blood clots, as she is required to stay in bed to avoid falls and further injury. Despite this, she has won over the hearts of many nurses, doctors, and hospital staff with her kindness, sense of humor, and genuine appreciation for their care and compassion.
She is now being transferred to another hospital an hour north, where she will be evaluated and prepared for brain surgery. As this journey continues, please send thoughts and prayers Heaven’s way. If so inclined, you are welcome donate to Emma's cause through the link below. Since the expected recovery time is measured in months, any amount is much appreciated.
For more insight into Emma’s journey and the wonderful person she has become despite these hardships, here are some additional resources and stories to explore.
Connecting Generations...It's not about technology
A Diagnosis is not a label. Building Resilience
Emma Surgery Update #1
On Tuesday, January 28th, Emma had her first surgery. Forgive the graphic nature of this update, but it is brain surgery. They drilled nine holes through her skull—one of which was actually through her jaw into her brain. They placed leads into her brain, providing 120 contact points, and have been gathering seizure data since then. Once they finish collecting data, they will surgically remove the leads. After that, they hope to determine the best course of action to reduce her seizures from a surgical standpoint. This is all happening because she has not responded to medications.
Emma Surgery Update #2
Here is the latest update on Emma. Prayers will be needed for tomorrow, January 31st.
Emma has had several seizures documented since returning from her first surgery, even while continuing to take her anti-seizure medications. For perspective, doctors were hoping to record three seizures over the two or three days the leads were in her head. She had two before the equipment was even set up. Yesterday, she had twenty-five seizures. All data indicates that her seizures originate from a single focal point in the right frontal lobe. The electrical activity sparking prior to the seizures—what also creates her “aura”—begins there as well. The good news is that doctors feel confident they now know where to perform the resection.
She is currently classified as severe, and they believe surgical intervention is necessary at this time. Most patients go home after the leads are removed to heal and then schedule a later date for the resection surgery. However, Emma will actually undergo two brain surgeries tomorrow, January 31st. The first will be to remove the leads as well as insert a titanium plate where they had to drill through her jaw. This plate will remain in place for the rest of her life. The second surgery will be a frontal lobe resection to remove the small section of tissue—2 cm by 2 cm—where the seizures are beginning.
Due to the detailed data collection, the surgeon believes this is a best-case scenario, with no expected impact on her memory, speech, motor skills, or personality. The location of her seizures is in the safest part of the brain for this type of intervention. She will still have seizures after surgery, and recovery will be challenging, but in most patients, seizure activity eventually calms down. The doctor reports that this is her best chance for a reduced or seizure-free life as time progresses. It could take up to a year or more, but they hope to see a significant reduction or even cessation of her seizures. She will also continue taking medication.
This is the first treatment option because her seizures originate from a single focal point. The RNS device is the second treatment option, but it is not as effective as a resection for her type of seizures. If this surgery does not work, they will consider the RNS device. We are scared but hopeful and have to trust God as well as the doctors.
Emma’s Personality Through It All
Emma is conscious and talking, even though she is on heavy doses of her medication. Since she has been in the hospital since January 9th, the veins in her arms are all used up. Evidently, she also has small veins, which made it difficult to insert a new IV line. The nurse called the hospital IV specialist to switch her IV last night. He entered the room with a portable ultrasound machine, which he used to find a vein. He then watched the needle on the ultrasound screen as he inserted it into her arm—slick as a whistle.
As the specialist was searching for a vein, Emma was watching the ultrasound screen. Suddenly, she piped up and asked, "Is it a boy or a girl?" The specialist was taken aback at first, then started laughing. With a smile, he responded, "One of each!"
Emma has managed to maintain her sense of humor and faithful outlook through all of this. She is truly an inspiration.
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Emma's Surgery Update #3
Yesterday morning, Friday, January 31st, Emma underwent two surgeries.
The first surgery was to remove the nine lead wires from her brain. That's what you see in the picture coming out of the gauze wrap on her head. For context, these wires go through the skull and into the brain tissue. They are surgically secured to prevent movement and cannot be pulled out.
The second surgery involved the resection of a 2 cm by 2 cm section of her right frontal lobe. The medical team felt confident they located the origin of her seizures. They made an incision from near the top of her right ear to about the midline of her skull, along her hairline. They then removed that section of brain tissue.
She is now recovering in the Neuro ICU. She will likely remain there for a couple of days before being transferred back to the neurology floor. Her recovery is progressing as expected, but she faces a long healing process. We do not yet know how long she will stay in the hospital. However, we do know that her home care will most likely include Home Health Care nursing support and Physical Therapy to help her regain strength and coordination. She has been in a hospital bed since January 9th.
As a family, we deeply appreciate all the prayers, love, and support shown by family, friends, acquaintances, and even those we don’t know. Your kindness has lifted our spirits and eased our burden.
Here is a fun reel put together by Amanda, my other daughter. It shows the personality, courage and resolve Emma has shown through all of this adversity and pain. The video was taken the night before her double surgery. I hope it brings you a smile. Emma would hope it does as well.
https://www.facebook.com/stories/4348621681833981/UzpfSVNDOjQ3NDAzMzUxMjIzODc0OA==/?view_single=1
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Emma Surgery Update #4
We are grateful to share that Emma has been moved from the ICU and is now on the Neuro Floor. She is recovering as expected, with no complications, which is a tremendous blessing. While she has been experiencing significant pain and spends a good deal of time sleeping, we know that rest is an important part of the healing process.
Despite the challenges, Emma continues to maintain her unwavering faith and sense of humor, which inspire us all. We remain hopeful that she will stabilize and be able to come home soon. The doctors have expressed optimism about her prognosis, though they have noted that a full recovery may take up to a year. This journey will require ongoing support from her cherished family and friends.
Emma is fortunate to have her incredible sisters by her side: Amanda, a dedicated NICU nurse, and Stephanie, a board-certified ABA and university professor. They are currently managing her GoFundMe and Venmo accounts to help with medical expenses and other needs. Your support, in any form, means more than words can express. Every donation, message, and prayer has provided strength and comfort during this difficult time. Click this link for donations
We are deeply touched by the outpouring of love, generosity, and encouragement from all of you. Your kindness has been a beacon of hope, reminding us that we are not alone on this journey. Thank you from the bottom of our hearts for standing with Emma and our family as she continues her path to recovery.
With heartfelt gratitude,
The Schultz Family
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