It happened so quickly that I don’t even remember how it happened or what happened. All that I know is the story of my survival, my family's resilience and our strong faith in our faithful God. I am learning more and more each day about my incredible journey.
It was one day around Christmas 2012. I had left work feeling lousy, like I was coming down with something. The next morning I had fever, back pain and a severe headache. My family took me to a local hospital. I was confused and disoriented. The initial tests showed that I might have an infection and CT scans of my brain and stomach were normal. I was admitted to the hospital and was started on antibiotics. On that same night, my nurse noted that my pupils were not the same size and not reacting to light. Another CT scan of my brain was done and showed swelling and brain herniation. I was intubated and air-lifted by a helicopter to the Neurological Intensive Care Unit at UMass Hospital in Worcester, Massachusetts, where I arrived already in a comatose condition. Another brain CT scan showed progression of the swelling and herniation blocking the drainage of the spinal fluid (CSF) from my brain. It also showed signs indicating a severe infection in my brain called meningo-encephalitis. A neurosurgeon placed an EVD (extra-ventricular device) to help drain the CSF and decrease the pressure in my head. I had already been started on antibiotics to fight the infection and other medications to decrease the swelling and prevent seizures from occurring. Despite all that, the pressure in my head kept rising, and I was started on a therapeutic hypothermia (my core body temperature was decreased to around 33 degrees Celsius) in an attempt to decrease the pressure, but it too didn’t work.
My doctors didn’t give up on me and my body didn’t give up. The neuro ICU physicians induced a deep coma using phenobarbital, which eventually helped control the rising pressure in my head. The infection affected all of my systems; my blood pressure was dropping, and I was on vasopresssors to support it. In addition, I developed a blood clot in my arm, and I was on blood thinners to prevent progression. Fluids accumulated around my lungs causing pleural effusion, and the doctors removed it with a procedure. After a month in the ICU, an MRI of my brain was done showing strokes in some parts of my brain, and it also showed infection surrounding the front of my brain. The neurosurgery team took me to the operating room and evacuated that infection, and they also took a biopsy of my brain, which showed necrosis and dead tissue. By that time, I had spent almost a month and a half comatose in the neuro ICU, and my body had gone through a very rough journey, I started to improve and became more stable. The phenobarbital had already been discontinued. I was started on amantadine, a medication to enhance my wakefulness, and slowly I was waking up. They placed a tracheostomy tube and successfully weaned me off the ventilator. I also had a stomach tube (PEG) placed for feeding and medications. By the end of my stay in the neuro ICU, I was able to move my arms and legs, but I wasn’t yet able to talk or communicate verbally.
Throughout my stay in Worcester, my family was there all along, and I had a steady presence of praying friends. My room was always full of times of prayer, singing worship songs and hymns that I knew.
The neuro ICU team had done an incredible job getting me through those challenging times. In February 2013, I was transferred to Spaulding Rehabilitation Center where I spent six months regaining my strength and other skills. Just as incredible as the skills of the neuro ICU team at UMass were the skills of the staff at Spaulding. They explained all of the phases that I would go through. They discovered that I could read. They had me walking and swimming, which I always loved. A volunteer music therapist started working with me to sing “Amazing Grace.” Although speech was a struggle having aphasia, I was soon singing the words to familiar hymns. My family and praying friends were visiting every day, engaging me with trips to the aquarium and singing around the piano. There were many ups and downs. Our family and friends became “family” with all who cared for me, just as in Worcester.
My family was protecting my 6-year-old son from seeing me. They were fearful how I would respond if I saw him. I still was not speaking or responding consistently to yes or no questions. By the time Easter was there, they felt I had progressed enough that it wouldn't be too traumatic for my son to see me. On Easter Sunday, they brought him over, and when I saw him I cried, reached out to him and said his first and middle name, the first clear words I had spoken after my injury. My family feels the Lord gave them an Easter miracle. Since then, began the self-awareness that everyone was praying for.
Eventually, I came back home to my family on July 9, 2013. I was back to my church and my activities. Over the past year and half, I have made significant recovery; I started singing again on the worship team choir at my church. I took up rowing on the Connecticut River. I am knitting again. I go bowling regularly with my family and friends. I participate in a center for people with “acquired brain injury.” I still enjoy singing “Amazing Grace” and John Denver’s “Grandma's Feather Bed” as much as I ever have. My journey of recovery continues. I still have much to learn anew.
I hope my story will inspire many of you whose loved ones have sustained a brain injury to trust in God and believe that survival is possible and recovery can be achieved. I thank all of the neuro ICU care providers who devote their lives to help people make such a survival and recovery a possibility.