It is important to note this story is read and approved by Butler before I post anything. The last thing I want to do is post anything sensitive or against my husband’s wishes.
On November 1, at 3:22 pm after a heart attack, Butler’s neurosurgeon immediately took him to surgery to remove his brain tumor. It was the longest afternoon of my life. Our family filled an entire large waiting room while we all waited to hear how the tumor resection went. In a time where I felt so lonely, in limbo wondering what life held for my family, it was comforting to be surrounded by all of Butler’s aunts, uncles, siblings, cousins, and parents. Hours later, the neurosurgeon came out to let us know Butler was out of surgery, and that he miraculously was able to remove the entire tumor. The tumor would then be sent off to the Mayo Clinic for testing. (It is important to note at this point, we did not truly know whether or not his tumor was cancerous.) A lot of cases of GBM are not so lucky; often times the tumors are located deeper in the brain, putting the patient at risk for severe deficits if surgeons try to remove it. Sometimes the tentacle-like Glial cells wrap around ventricles and
veins; making it impossible to successfully remove the tumor in its entirety.
Butler was set up in ICU to recover from his surgery. He was put into a medically induced coma. The thing we learned about brain surgery, is the only way to heal the brain, is to sleep. Most of the time, patients with GBM will be put into a medically induced coma and intubated for 2, maybe 3 days before they are woken up, extubated, and can typically go home soon after. In Butler’s case, there were complications. When the neurosurgeon removed Butler’s tumor, the amount of pressure that was released in his brain caused a stroke that started in his tumor site, and ran down the ride side of his brain. He also had residual issues from his heart attack, which caused his heart function to drop down to 20%.
I remember being so thankful my husband made it out of brain surgery alive. I was so thankful we had an answer for his “migraines,” that we were on the other side of that. He was ALIVE. What I didn’t know, was how long the road ahead of us was. That first day where his tumor was removed, sitting in the ICU waiting room with his family, was just day 1 of 18 long days.
Because Butler was in ICU, the amount of people that were allowed to visit was severely minimized. It is hard to remember exactly how the first few days went, but for the most part, me, the kids, and Butler’s immediate family would stay as late as we possibly could. We took turns going from the waiting room to his ICU room to sit with Butler. He was by far the youngest patient in ICU, and he definitely had the most vistors! The first few days post surgery, he was hooked up to an unbelievable amount of machines. When I was alone in the room with him, I would sing our favorite songs to him. I would talk to him about anything I could think about. I wanted him to hear me, to know he was not alone. At night, I would pack our children up, and make the long drive back home to Moncks Corner from West Ashley. Thomas was 8 months old at that time, and he HATED riding in the car, so every ride home at night was full of crying and screaming. I was completely numbed out. I am usually a very emotional person, but from the moment I found out Butler had a brain tumor, I went numb. I had no time for emotions, I had to mentally prepare myself to possibly take care of our children, of our life on my own.
Every day consisted of waking up the kids, packing up any and everything we needed for a day at the hospital, and heading to West Ashley. Some people may question my decision to bring the kids with me to the hospital every single day. I was homeschooling Ella, (which was put on hold through this entire process) and exclusively nursing Thomas. We have always been a family that stayed together, so it made sense to keep them with me. The last thing Ella wanted was not to be at the hospital if her daddy woke up. Being with me, her daddy, and her brother was what brought her comfort.
By day 3 or 4 of Butler’s medically induced coma, I was awakened by a phone call at 6 am from the hospital. Butler’s lungs could not handle being intubated, and his right lung collapsed. The doctors were calling me to get permission to put a chest tube in Butler. It was around this time the doctors decided to put a PICC line (Peripherally inserted central catheter) to deliver all of his medications to reduce the amount of times the nurses had to stick him with needles. I realized in that moment that as his wife, I was responsible for making these big decisions for him. I agreed to let the doctors put his chest tube in, and that started the process of days of waiting for his lungs to heal, so he could breathe on his own again. As long as he was intubated, he could not come out of his coma.
Part 3 coming soon, stay tuned!
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