Well team, here it is. This is a very long, emotional post. I am sharing Steve’s story, from my point of view. I have left some details out, out of respect to Steve. I have discussed this post with him, and he gave me permission to share his story. This is something that changed our lives forever. Grab your box of tissues, and take a walk back in time with me to the scariest night of my life up until this point in our lives. I was 35 years old, not even had my 36th birthday yet. Steve had just turned 36 years old when this happened to him.
I will remind you, to respect, that this is very personal, and this is Steve’s story from my prospective. This has been a very emotional experience to relive this. I hope it helps people to understand Steve better and to understand what motivates me, and why I do what I do.
I get asked all the time, about why Steve is not with me during the semester, and why can’t he work, and other not very nice things… He has come a very long way. In order for me to do what I need to do, in order for me to have a future for us, I need to be able to focus on school and work. It kills me and him just a little each day when we are not together. He has been staying at my moms since last spring, after his lung surgery. He knows that the hard work, dedication and passion that I put into my schooling is required for me to work full-time night shift and finish nursing school. He knows that as soon as I’m done and graduated from school, he will be home with me, and we will have the life we deserve.
The accident that I had may have delayed that, a bit but, I will not let it prevent it from happening.
You will notice, that the post has a bit of a cliff hanger… that is not to keep you in suspense. I simply need to pull myself together to write about another emotional experience in our life… please be patient with me.
In November of 1994 we started dating, I told him that I was in this for the long haul and he agreed. When we stood in front of family and friends on September 28, 2002, the day we were married, we each made a pledge for better or worse, sickness and in health, till death parted us. We had been through a lot during our relationship and our marriage, but we loved each other, we had made a commitment to each other. I knew that our life was changed; little did I know just how much our life would be changed on this day.
May 19, 2013 Approx 4am
I was at work when the call came to my cell phone. I looked at the caller ID that flashed on my screen. It was our best friend, Bill. I knew something was wrong because he never called me at this time of the morning unless something terrible had happened. I could hear the worry in his voice, as soon as I answered. “Steve is being rushed to Anne Arundel…” He was found unconscious, gray in color, I think he might be…we called 911. They came, were able to revive him, his respirations were barely visible. He was found covered in vomit, and almost dead. I jumped up from my computer where I was charting from my morning rounds. I ran down the hall, to my charge nurse, told her in a hurry, what had happened, she took my work phone and papers. I ran down in 8 seconds, all the info on my patients that need to be told. My coworkers opened the locked doors to our unit, and one ran to the elevator to hold it open. I could not will the motor to move fast enough. On the first floor, the doors opened and I ran, down the hall of the hospital, with tears streaming down my face, my breath catching with every inhale. As I passed people I knew, they all asked, “Are you ok?” “What’s wrong?” I got to the emergency room, and realized that I had beaten the ambulance. I ran through the doors, swiping my badge as I went to get through the locked doors. I ended up outside, in the ambulance bay. I was crying so hard. My mind was racing, the argument that happened between us before I left for work, words that we spoke to each other; words that now neither of us could take back now. I found my self pleading, begging on my hands and knee’s. Praying to every deity, I knew and some I did not. My phone rang again, and I almost jumped out of my skin; it was Bill. He and his girlfriend were on their way, to be with me. Bill was Steve’s best friend, since they were young children. Bill was also, my best friend for almost 20 years. We had been through everything; he was our best man when we married. We laughed, cried; our lives were entangled and he knew me; exactly what I needed. His voice started to calm me down. Just as an ambulance, pulled in to the bay lights flashing. I knew in my soul, in my heart that Steve was inside. I had a sick feeling in my stomach, that all was not right. I hung up the phone, saying “I’ll see you soon…” I stood to the side, willing myself to calm down; knowing that if I was hysterical I would be asked to leave. As the doors opened, I could see the just how serious the situation was. I could see his body, laying on the stretcher. He had a mask on his face giving him oxygen, wires, tubes and machines connected to him. The paramedics who wheeled him into the hospital, recognized me, not just two weeks prior to this they came to my house to pick up my mother-in-law who had fallen at my house at a mother’s day celebration. The paramedic, looked at me, and a grim, sad look took her face. She silently shook her head. I spoke to her in a calm, soft voice “that’s my husband” is all I could say. The look of horror on her face, she simply said, “I’m sorry”. I walked beside them, touching his shoulder. His eyes were open but not seeing. I watched as they wheeled him into the treatment room. I stood outside the room, letting the nurses, doctors and techs do what they were trained to do. The staff stood around me, asking me questions, his name, date of birth, asking his medical history, what brought him in, his medication list, it was rapid fire questions, to help them treat him. I answered like a robot, telling them what I knew. The medication question is what stopped me. I knew his medications like I took them myself. All of the medications he took for his health problems; blood pressure, cholesterol, diabetes and his pain medications. Normally, I could rattle them off spelling each one, giving the dosage, and the frequency. My brain froze; it was blank, empty space. I seemed to freeze as the world kept moving around me, the people running down the hall, the crash cart being pulled from the alcove behind me, the doctors running in to his room, the nurses pulling medications, someone calling for an intubation kit. I started to loose my footing, I had spots starting to cloud my vision, the hallway started to spin. It was at that moment that a chair was placed under me. The next thing I knew I was sitting down. I had a staff member who was standing at my side; I said to her, that my brother bill and his girlfriend were coming, please send them back as soon as they arrive. You see at that time, I needed them. I needed to see family, and they were family. My eyes focused on them as they turned the corner; I broke right then and there. I knew in that second, that no matter what happened, to the love of my life, my partner in life, my entire world who was possibly dying; we were not alone. I had arms wrapped around me, and I sobbed. It was the ugly kind of sobbing. I don’t know how long we stood in the hall. The three of us holding each other together, my two best friends and I.
It felt like hours or days later, a hand touched my should, it one of the nurses. She told me that they had cleaned him up, that he had lost his bowels, and bladder; and he was now on a ventilator to help him breathe, he had also gone for a CT scan of his brain. She wanted to prepare me prior to seeing him. The next thing I knew, I was standing in the room with Steve. He was very swollen and pale. His face was alien to me, I knew that he was the man I loved, my husband, my entire world, and he just looked different. I very softly kissed his forehead and whispered in his ear, that I loved him. It was not long before the doctor came in, to speak to me. When our eyes met, recognition crossed her face; she looked at Steve, then at me, then down at the paper in her hand, as her eyes filled with tears. Very softly she spoke, “this is your Steve?” I shook my head and she came over to hug me. You see, she knew me since I was a young girl. My mom worked in her office for many years. I felt a slight calm, knowing that the team who would be treating him, was a highly respected group of physicians. It was then that I herd the words for the first time, Anoxic Brain Injury (ABI). To help you understand, I have pulled information from the brain and spinal cord injury website.
“Adequate oxygen is vital for the brain. Many factors can cause the brain to receive inadequate oxygen. When oxygen levels are significantly low for four minutes or longer, brain cells begin to die and after five minutes permanent anoxic brain injury can occur. Anoxic brain injury which is also called cerebral hypoxia or hypoxic-anoxic injury (HAI) is a serious, life-threatening injury; it can cause cognitive problems and disabilities. Some HAI injuries are due to a partial lack of oxygen; the term hypoxic means partial lack. Other HAI injuries are due to a complete lack of oxygen; the term anoxic means total lack. The greater the loss of oxygen, the more wide-spread and serious the injury will be.”
Steve had been without oxygen and suffered brain damage; he had aspirated vomit into his lungs. Officially they were treating him for pneumonia, and brain swelling so he needed to be sedated to give his lungs and body time to rest and heal. The machine that was helping him breathe also was providing him with oxygen, something that his brain had been deprived of. He would be sent to the critical care unit, for a short time until his condition improved. He had swelling of his brain, that was being monitored, if the swelling did not stop, then he would be taken into surgery to relieve pressure on his brain to avoid further damage. As I listen to the doctor talk to me and give me full updates, I could feel my brain listen, and process but I also could feel myself separating and moving away. I could feel myself watch the scene from afar. I could see the love of my life, sedated, swollen, pale and lifeless. I could see the worry on my face, the dried tear streaks that ran down my face.
After several hours, that felt like days we were transferred to the critical care unit. I had spoken with our parents and friends, given them as many updates as I could. His nurses, techs and respiratory therapists got him settled into his room; cleaned up and on his new monitors; the doctors came and went. I was told that if I wanted to stay, I would need to be calm. Steve was sedated and yet he could still hear everything going on, so to keep him calm I had to stay calm. This was something that each visitor to the room had to be told, and each visitor to the room had to be reminded every time. We spoke in low hushed voices, and out of earshot, if anything was being discussed concerning his condition. We would not know until they lifted the sedation the full extent of his brain damage.
As he lay in the bed, his ventilator made a rhythmic: whoosh, pause, whoosh, pause as it was breathing for him. His heart monitor would beep, blood presser cuff was set to inflate and deflate every 15 minuets. He had an NG tube placed ( a tube that goes into his nose and down to his stomach) that was suctioning a liquid from his gut. I can only describe the look of it as black/green sludge that had a smell of rotten decayed food. It was a putrid, rancid smell that hit you in the face as you walked into his room. It’s a smell or a sight I will never forget as long as I live. He had a rectal tube, which was draining the same looking black/green sludge; both tubes were emptying into large suction containers on the floor. He had several full containers that were lined up on the floor, that were filled to the top, each holding about 3 liters of sludge. His IV machine was beeping and flashing with several bags of fluid hanging from the top of the pole. His eyes would flicker open and shut, but he would not really see. I was hopeful that he could hear me, so I would whisper words in his ear, tell him I love him and wanted him to come back to me.
I had been awake since noon on Saturday prior to my shift. The day was now Sunday, and it was sometime late in the evening. I had not left his side since coming to the hospital. I had not eaten, or even left to go to the bathroom. The visitor policy on critical care unit is two persons at a time. I refused to leave his side; so only one other person could visit at a time. I wanted to be there if he was to wake up. I wanted my face to be the one that he saw first. His doctor, who was another part of the same group, was very concerned about my health. He convinced my mom to take me home so I could get some rest. My own eyes were blood shot; I was still wearing the same clothes from the day before, I would only leave on one condition any change in his condition, I was to be called right away, no matter what time. His doctor and the nursing staff agreed. I was not happy about leaving him, but I knew that he was in good hands and I could not do anything in the shape I was in. I would need to leave his care to the capable nurses and doctors overnight. Little did I know that would be the last time, I would ever leave him while he was in the hospital ever again.
I cried myself to sleep; only getting a few moments of sleep it was just enough to recharge my body. 5 a.m. the ringing of my phone woke me. I looked at the caller ID it was the hospital calling. My brain told me that it was either the doctor calling to give me bad news, or my unit calling to check on me…I took a very deep breath and pushed the ‘answer’ button. I would never have expected to hear the most wonderful sound on the planet. “Hi, honey…It’s me.” I burst into tears, sat strait up in the bed. I thought for a minuet that I was dreaming. I said “Hi, baby, are you ok?” he then said “I’m in the hospital, they told me I’m at Anne Arundel” I silently giggled and smiled. I told him that I knew, and I had not been gone very long; I was sorry I left him. I started to ask him questions, “did he know who he was?” “Did he know what happened?” His responses were slower than the Steve I knew. I could hear a difference in his speech. I could sense a difference coming from his through the phone, fear, uncertainty, and an almost childlike tone to his voice. He knew his basic information. When I asked him “what day did he think it was?” He responded with “Saturday”. I asked him the last thing that he remembered, after a long pause, he said: “Friday evening, we had dinner before you left for work.” A long pause, from my end of the phone, then I explained what I could, and filled in the blanks that I could. I told him, I would be there as quick as possible, and most importantly that I loved him. I told him, not to call anyone else until I got there.
A few hours’ later, I was sitting at his side, waiting for the doctors to make afternoon rounds. I had found out a nurse had let his sedation medication run out, by accident when she was in an emergency with another patient. What he woke was disorientated, scared had started to fight his intubation tube. So the doctor had decided to extubate him, to see how his lungs would do. This was not the plan that we had agreed to the evening before when I left. A new doctor was covering overnight and did not know the full plan. I was very happy that he was no longer on a breathing machine; I was very concerned about his lungs and his brain health. Over the next few hours, the tubes that had been inserted had been removed. His GI status was questionable, the medical team was stumped as to what had caused him to have the color and smell of what was removed from him. While waiting for afternoon rounds by the doctor I started to really watch Steve and notice the new things about him.
First, I noticed the cadence of his speech, it was ‘off’. It was not quite right, but I could not put my finger on it. When the staff would speak to him, I noticed that he would take longer to answer; he would look at me with a scared and quizzical look on his face before giving short, one – two-word answers after a delay. He would smile at them, but his smile was different, not the full mouth smile that used to reach his eyes that I knew and loved, it was now like someone who had had a stroke; one side of his mouth drooped just a little. His feet danced on the bed, like bending and twisting in very unnatural ways. The look in his eyes was so different. I would look into them, and they were the eyes of someone who was lost. They had lost the look of ‘life’. They were not quite ‘dead’ but it was just different. The color of his eyes even changed just slightly, they were a bit grayer than the hazel green they used to be. It made me extremely sad to see that the changes in him. I would watch him try to eat, he would use his fingers and hands. Eating things like jello, he would use his fingers, not a spoon. When his dinner arrived, I watched him struggle, with the fork and knife. He would grab it with his whole hand like a child just learning to use one, not the way a 35-year-old man who used them every day of his life. The nurses and doctors just assumed he always ate that way, and that he simply needed a bigger bed the dancing in his feet was because he was uncomfortable. His full neurological and gastrointestinal status was a complete mystery. His lung scans improved, over the next few days. He was transferred to a medical surgical unit and prepared for discharge. As friends and family would come to visit, they would all remark to me about the changes in Steve. I would simply nod, and smile. I was simply thankful that he was alive.
We followed up with our primary care doctor and were seen by a wonderful neurologist. We finally were given a diagnosis and what to expect. Steve has brain death of the inner basal ganglia both left and right hemispheres. To better describe what steve had been Anoxic Brain Injury (ABI). Steve has a neurological movement disorder, Chorea. He suffers from the same symptoms as a patient with Huntington’s and Parkinson’s disease without the progressiveness of the disease. He lives with left sided ticks, and constant movement of his left shoulder, arm, neck and head. He also has memory and cognitive difficulties (his thought process is slower than normal) and balance problems. Steve’s brain processes things differently than you or I. After his ABI, he was not able to return to work, so he was put on long-term disability with his employer, the insurance company refused to pay for physical therapy or occupational therapy outside of the hospital because he was not evaluated while he was an inpatient by a neurologist. I did all of that for him, helping him to adjust to his new life with his new body and mind. I am very proud of how far he has come. It was almost one year after his brain injury that he finally was approved for full disability.
I will give you a few examples of obstacles and triumphs that we have been through the past almost 3 years.
If we are to go to dinner, and he is asked what sides, he wants with his main dish and the wait staff rattles off 5-6 items; he needs more time to process what each item is, and what he likes to eat. He will normally look to me, and I will take the list down to 2 or 3 options of things he will eat. I also will slow the rhythm of my voice down, to give his brain the time it needs to process.
Steve can no longer drive, or work. This has been a huge disappointment for him. He has lost some of his independence.
When he gets upset or frustrated, his symptoms get worse, his ticks and involuntary movements are very bad. He also has outbursts, which sometimes are uncontrollable similar to a person who has turrets syndrome. After Steve’s Anoxic Brain Injury (ABI) it was over six months before he laughed for the first time. We would tell stories, jokes and laugh and he would look at us with a bit of a lost expression on his face. He would always look to me with a slight smile but I knew he did not understand. I would simply grab his hand and smile at him. Then, it was November 2013 someone was telling a funny story, and the most amazing thing happened; Steve laughed, I mean a long belly laugh…it just went on for a few minuets and it was the best sound I have ever heard other than his voice on that Monday. We were all sitting around and just looked at him, I had tears in my eyes, then we all started laughing with him. It was like hearing your little one really belly laugh for the first time, a genuine laugh. I have never forgotten that.
Steve has come a very long way since his ABI, and I love him for who he is. The medication he takes, for his Chorea, has a very bad side effect, major depression and suicidal thoughts. Now, I know what you’re thinking, why on earth would I let him take that? Well, the answer is simple. It’s the only medication that helps him. We went through several different medications, and dosages. This medication was a last resort. This is the reason, that during the semester, he now stays with my parents. I am gone some days for 18-20 hours of the day betweens school and work. When I do come home, I am nose to my books and studies. I do not want him to be alone that many hours of the day, every day of the week. He also takes a medication that is generally for turrets syndrome. The combination of the two has greatly made a difference in his symptoms. His neurologist wants Steve to see a movement specialist at the University of Maryland, but the only insurance that I can afford to work only covers providers that are in-network, and we cannot afford to pay out of pocket. We take things as trial and error and make the best of the situation that we are in.
It took 2 ½ years, but we finally have a diagnosis for his gastrointestinal issues he has been having. Steve would go through a cycle, he would eat, anything and everything non-stop like he is starving, then he will sleep, I mean he could sleep for 24-35 hours, then the belching will start, the smell is exactly what I smelt that when he was in the critical care unit, rotten, decayed food, then the vomiting will start, projectile uncontrollable, forceful the same black/green sludge, then his bowels will start to work, then he would be exhausted for about a day then next day he would be better. The projectile vomiting sounds like someone is pouring out a bucket of water from 3 feet off the ground, every time this happens to him, he is not getting oxygen or breathing. If he were to force himself to inhale he would aspirate that into his lungs. We finally, after going through this cycle 4-5 times per month at its worse, we saw the right gastroenterologist. Who did some testing on Steve to determine the cause? A colonoscopy proved to save his life because a few polyp’s were found, that thank goodness they were caught early, they were biopsied and found to have precancerous cells in them. So he is now on a protocol. The upper endoscopy and the detailed account of his symptoms gave us a diagnosis. He has been diagnosed with Gastroparesis. Gastroparesis interferes with normal digestion, causing nausea, vomiting, and irregular blood sugar levels. The spontaneous movement of the muscles (motility) in his stomach does not always work. Normally, strong muscular contractions propel food through your digestive tract. In Steve’s case, his stomach’s motility works poorly and sometimes not at all. The cycle that he was going through, now only happens about once per month with his medication he now takes.