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Tag: heart attack

  • Butler’s Brain Cancer Story – Part 3

    I want to thank everyone who has been taking the time to read and share Butler’s story. Writing this story out has been emotional and therapeutic for the both of us. I have Butler read every post before it goes live, and there are a lot of things he does not remember, so it’s helpful for him to be able to read his own story.

    **This post contains pictures that may make some viewers uncomfortable.**

    For 7 days after Butler’s craniotomy and tumor resection, he was in a medically induced coma and intubated. He was depending on a ventilator to breathe for him. Every morning, the nurses would see how his lungs could function without the ventilator, and every morning was a decision to keep him on it. The more days went by, the more nervous I became. What if his lungs didn’t heal? I started to ask the doctors what happens if his lungs never get to a point where they could function off the ventilator? I never got a straight answer, and looking back, I think it’s because the actual answer would have been very grim. As they tested his lungs each morning, they would decrease the dose of sedative keeping him under just slightly. If I was there, I would talk to him, and he would squeeze my hand!! Sometimes he struggled, especially towards the end of his sedation. I think his body and brain was OVER IT. One frightening detail was that he had to be restrained while he was intubated, and one day I realized why. They decreased his sedative, were adjusting his position in the bed, and he was”awake” just enough to try to rip the intubation tube out of his throat. So yeah, he had to be restrained. I don’t know anyone who would want a tube down their throat though, the entire situation is wildly uncomfortable.

    Finally, on day 8, the nurses tested his lungs again. He had myself, and his Aunt Kathy with him. The goal was to let his lungs function on their own for 30 minutes without the ventilator. They decreased his sedation, and slowly decreased the amount of oxygen coming from the ventilator. Me and his aunt stood one on each side of him, cheering him on, watching the minutes go by on the clock. The closer we got to 30 minutes, the more we cheered. It was the most hope we had felt in a week. The more his sedation wore off, the more uncomfortable he became because he still had the intubation tube down his throat. After 30 minutes everyone in the room cheered because HE DID IT!!!! I cried with joy.

    I was so thankful to have my husband back with us. That week where he was in a coma, I had never felt more alone. I think it’s easy to take the most simple things for granted sometimes, and it’s not until you realize how easy it is to lose, that you realize how special they are to you. All I wanted was to hear his voice, to hear him tell me he loved me. I wanted to walk down our street holding hands with him and our kids again, like we did every day before. I wanted to hug him and hold him. These most basic things suddenly felt so far away, and that was one of the hardest parts of this situation. The most mundane things of your everyday life are actually so, so precious. This experience truly put our life into perspective for me

    It was difficult for Butler to talk for a few days, understandably. We didn’t know it then, but his voice would never completely come back. Very small percentages of people who are placed on a ventilator experience damage to the vocal cords that are permanent. He can speak clearly, but his voice sounds different, and he cannot project his voice like he used to be able to. Now that he was awake, we could evaluate his brain function, among other things. We learned that his vision was impaired. He lost any left sided peripheral vision in his left eye. It took about a year for us to learn that the vision loss was from his surgery, and not his stroke. If it was from his stroke, it would have regenerated. His tumor was pressing on his right eye, and the surgeon had to move an optic nerve to get the entire tumor. He also had some left sided weakness from his stroke.

    Butler’s heart was still weak, and needed time to heal and gain strength. So at this point, we were waiting for his heart to heal, his lungs to heal, and his brain to heal. But we were making progress in the right direction! Considering everything Butler had gone through, it truly was a miracle that he was doing as well as he was. I was worried about his memory; would he remember us? What WOULD he remember? He did not remember much of anything from the last 9 months before he went to the ER. He could tell me when we got married, his birthday, he knew we had 2 children. But those 9 months were just blank in his mind. He did have short term memory issues, which has definitely improved over time. It is amazing to see how the body can heal from even the most traumatic events over time. 18 months later, Butler’s heart is doing amazingly well, as are his lungs and brain.

    Butler started physical therapy as soon as he could. It took a day or so after he woke up to get some nutrition into him. He had been given nutrients through a feeding tube while he was intubated and still had to stick to a liquid diet while his throat healed. He had to learn how to walk again, especially given the left sided weakness from his stroke. From day one, he was determined to get back on his feet and be independent. Butler is not a man who enjoys having people taking care of him and waiting on him. His strength and determination amazed me.

    Part 4 is coming soon!

    You can find part one of Butler’s story here: Butler’s Brain Cancer Story – Part one and part two here: Butler’s Brain Cancer Story Part 2

  • Butler’s Brain Cancer Story Part 2

    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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