by Catherine Davis
As the mother of five, I typically stay on top of vaccines and appointments. But 2023 was an off year, and we were late with flu vaccines–a mistake I will never make again.
That year, my second youngest (Zachary) came home with flu symptoms on Halloween, a Wednesday. He stayed home while the other kids went trick-or-treating.
By Friday, my youngest, Sophia, had caught it as well. When Sunday rolled around and Zach was feeling worse, we went to the urgent care.
They were both tested for all the pertinent viruses and found both to have the flu, but Zachary also had strep throat.
Zach made a full recovery pretty quickly with antibiotics on board. Sophia, however, deteriorated rapidly. Tuesday, Wednesday, and Thursday found us in the Emergency Department because she was unable to keep even liquids down and was so sick. At the time, I had no idea of the possibilities before us.
The Longest Month of My Life
I had to insist with both her pediatrician and the ED that there WAS a bigger problem until finally they admitted her for observation. She first had an EEG, and twelve hours later, they scheduled a four-hour MRI, during which she was intubated. That was the last time I saw her awake, before our entire life changed.
After the MRI, everything seemed to happen at once: at mach speed yet agonizingly slow. Suddenly, I was told her brain was swelling too quickly for them to manage, and she was being prepared for a transfer from Wilmington to UNC Chapel Hill, where specialists could take over. It was late Friday night, drifting into early Saturday.
By Sunday morning, they rushed her for another scan after noticing changes in her pupils. That’s when the doctors told me they had only one option, and even then, they couldn’t guarantee she’d survive the operation. One doctor looked me in the eye and said, ‘I will do everything I can, but you need to prepare yourself.’ Nothing can compare to that moment.
That day, November 11, they removed both sides of her skull. It was a week after she was diagnosed with influenza and twelve days after her brother first had symptoms. We spent the next month in the ICU, unsure of her future. Nobody could tell me if she would wake up, what her deficits would be, or how long was too long.
Everything was wait and see. Specialist after specialist. Her case was complicated by cerebral edema and finally a herniation of the brain stem. Her prognosis was not good. I cried as I bathed her that evening, my tears falling on her weakened body. I could see it in the nurse’s eyes that nobody thought she was coming back to me, or if she did, she would never be the same cognitively.
They threw every immunotherapy they could at her, and finally, there were slight improvements. They started slowly weaning meds and feeding through a tube. She would respond to stimuli when the paralytics were weaned. They tried to take her off the vent, only to find she had bacterial pneumonia. We treated that, which took an extra week.
How Our Lives Have Changed
In the meantime, she was waking up! She was responding to us and following us with her eyes. The day she mouthed I love you around her vent was one of the very best days of my life. Another MRI was done, and somehow, by the grace of God, her brain had rewired itself.
Once she was able to come off the ventilator, everything started moving quickly again. Within a couple of days, we left the PICU, spent a week on the main floor, and then transferred to rehab in Charlotte. There were a few bumps along the way, but within just weeks, she was walking, eating, talking, and doing all the things. She wasn’t quite her full self yet, maybe 80%, but it was incredible progress. After only three weeks in rehab, we were able to go home. It all felt surreal.
Unfortunately, she’s had quite a few setbacks. Since the initial surgery and hospital stay, she’s had five more brain surgeries and several PICU stays. We are still managing post-traumatic brain injury symptoms along with something called a pseudomeningocele, or fluid collecting under the skin. She is also experiencing some mental health issues due to the major changes her life has had to endure. She’ll never play football again, and that is something that affects her deeply.
While she’ll never be exactly the same again, she’s alive. She’s whole. She’s free from severe life-altering deficits. The new normal is hard, but she will be stronger for it. And I can’t tell you exactly what our future holds, but I can promise I’ll never miss another flu vaccine again.
Catherine Davis is [bio]. Her story, like all others on this blog, was a voluntary submission. If you want to help make a difference, submit your own post by emailing us through our contact form. We depend on real people like you sharing experience to protect others from misinformation.
