By mom Pennie
I pass by a picture on the wall of my son Alex running the Peachtree Road Race in Atlanta on July, 4 2018. In the picture he looks so strong and muscular. At 18 years old, he had just graduated from High School where he was the captain of the football team, captain of the basketball team and a State Champion winner for Track & Field. We would never have imagined that 7 months later, after running the Peachtree Road Race, Alex would be lying in a coma in ICU at Emory Hospital, fighting for his life!
Alex was a college student at Belmont University in Nashville, Tennessee where he was pursuing his dream of becoming a musical artist. Alex was first invited to visit Belmont and spend the day with their track and field team. That visit made him realize he did not want to pursue athletics but instead pursue a path in music. Alex was so impressed by Belmont’s music program, he decided to apply and audition for acceptance into the prestigious Belmont School of Music. He was thrilled when he was accepted and could not wait to attend.
We were excited for Alex to be attending a school where he could follow his dream. We visited him on his birthday in October and he was thriving. He had made many friends and loved being surrounded by other students who were also musically gifted. When Alex came home for Christmas break he wasn’t feeling great. He was diagnosed with Type B flu. He was given Tamiflu and bounced back quickly. When he left to return back to Belmont in January he was healthy and excited to get back to the school and friends that he loved. Alex had promised to get a flu shot at the student health center when he returned. Around mid-January he started feeling bad again. He wasn’t able to eat, felt nauseous, achy and tired. He went to Vanderbilt Hospital and was treated for TYPE A flu. This flu hit him much harder than the one in December. He again took Tamiflu but still didn’t feel great. Weeks after finishing the Tamil he returned to the hospital and was told he had bronchitis and was given a steroid. The steroid made him feel a little better but by mid-February he was still very tired and could not hold food down. He was having horrible headaches which he attributed to being dehydrated. We offered to come to Nashville to take care of him but he had Valentine’s plans with his girlfriend and begged us to not visit. He felt so bad, we suggested he go back to the doctor and ask them to check him for mono. Alex’s older brother had mono as a freshman and the symptoms sounded similar. Alex was diagnosed with mono two days before Valentine’ s Day. He was so sick on, he wasn’t even able to get out of bed and did not get to do any of the romantic things he had planned. He knew he was really sick and he called us to please come visit. We arrived in Nashville on February 18 and were shocked when we saw him. Alex had lost so much weight! We had seen him at a family funeral three weeks prior, but he looked like a different person than just three weeks before. We spent the entire week with him bringing him food and vitamins. We contacted the school and they were eager to help any way possible. We realized Alex was too weak to leave him alone, so we made arrangements with Belmont to bring him home for a couple of weeks to recuperate and get well. Belmont was going to allow him to complete his classes online and even drop one or two for an easy workload. His girlfriend’s roommate also had mono, and the school worked with her and her family as well. Oddly, Alex’s girlfriend never contracted flu, bronchitis or mono.
We arrived home on Feb 22. Alex seemed to be improving. He was able to eat more and did not have a fever. On Feb 23 we visited his doctor for bloodwork to see if there was more that we could be doing. He was given fluids and extensive bloodwork was done. Initial results were good, other than mild hydration. We were told that the complete results would take a few days but we were reassured that we were doing what was needed and that he was improving.
Tuesday, Feb 24, will be a day we never forget. Alex went with his dad to get a new phone case. This was the first time Alex had ventured out of the house since he had been home. Alex seemed sluggish and confused. He had trouble buckling his seatbelt. He had hard time deciding on a smoothie at Smoothie King – one of his favorite places. Alex was walking different – walking with his legs wide apart. These symptoms were new and disturbing and we knew something was wrong. We called CHOA to see if we should bring him to one of their locations. When we described his symptoms, we were told to get him to the nearest Emergency Room and have him checked for meningitis. What? Meningitis? Alex had been given his immunizations, including meningitis, as a requirement for college. Viral meningitis is not part of immunizations. Even though we were terrified, we held it together and got Alex to the Emergency Room that afternoon. As the day progressed, Alex’s voice became higher and more shrill. When he was asked questions at the hospital he would seem confused and look at us to answer for him. A cat scan of his brain was done and he was given a lumbar puncture. His dad held him up for LP and he fell asleep during the procedure. We knew something was very wrong – who could fall asleep while getting a painful lumbar puncture?
After the LP was performed we were told they would send put us in a room until initial results could be reviewed. No one seemed overly concerned about his condition and we were treated as if we were over reacting. We din’t care – we knew our sone and we knew something was not right. Alex walked down the hall with us to the hospital room. I sat in the bed with him and his dad slept on the reclining chair. Alex was given an IV of fluids. We were all exhausted and we drifted off to sleep. At some point, Alex shook me and said h needed to go to the bathroom. We held him wheel the IV cart to the bathroom and we all went back to sleep. Around 5 am, I was awakened by the nurse and asked if Alex had been responsive to us. We replied “Yes” but Alex wasn’t speaking. In fact, Alex wasn’t moving or opening his eyes. Alex was unresponsive!
He was whisked away and sent to ICU. Everything after that was a whirlwind. We were informed that initial results from his LP showed protein in his serum. We didn’t even know what that meant. The Emory John’s Creek doctors were meeting to discuss how to treat Alex. He needed to see a neurologist – they did not have a neurologist at their facility. We waited with our unresponsive 18 year old son in the ICU holding area while a group met to discuss our child’s life. My husband and I have never felt so incredibly scared and helpless than at the moment. Our technology based world where miracles are performed routinely – yet our son lay there with no one knowing what was happening or how to treat or even who could treat his condition. We had to completely rely on God’s mercy and the knowledge of those at the hospital.
It was decided that Alex should be taken to Emory mid-town where a team of neurologists and Infectious Disease specialists could look at him and work together to figure out his condition. Alex was transported via ambulance, but I was not allowed to ride along with him. I was told he could be contagious and no one was allowed to ride. I was devastated thinking my sick child was alone, maybe dying, with strangers. I cried and pleaded but could only follow behind the ambulance for the hour drive to Emory mid-town.
Once we arrived at Emory, a neurologist met with us and told us that Alex had brain swelling but that they did not know the source. Dr. Hall was very honest with us and said that he could not give any sort of outcome until they could figure out what was going on with Alex. Alex was given steroids, Aclovir, heavy-duty antibiotics….they were treating his encephalitis as if it were West Nile. Bloodwork was done, more lumbar punctures, MRI’s, Cat scans. Even though Alex was already unconscious, he was put into an induced coma, he was intubated, a machine was breathing for him. We were told that with brain swelling, the brain might forget to tell the body to breathe. It would take days to get results from all the bloodwork. We never left Alex’s side. I held his hand. I slept in a chair pulled up along his bed with my head in his lap.His dad slept in the floor in his room. His brother left UGA to stay with him. Liam slept in the floor in his ICU room. Grandparents brought Alex’s 13 year old sister to see him. Family came to visit and brought food. Friends visited and sent food. We prayed. Then we prayed some more. Alex’s High School football coach came to see him. HCA principal, teachers and basketball coach came to see him. His father and I never left his side. Everyone cried and everyone prayed. Everyone was scared.
After three days, we were given some good news. It was determined that Alex did not have a bacterial infection and was not contagious. Only Epstein Barre virus (mono) had been found in his spinal fluid. Although rare, the virus had broken through the blood-brain barrier and made its way to Alex’s brain. If Alex’s heart, lungs and other vital organs had not been strong, he would not have been able to have lived. Other than the brain inflammation, we were told that Alex’s was strong; his body was strong and that he was a fighter! Alex was going to live and he would recover. We praised God for his mercy and we celebrated! We were told that his recovery would a long process… but we had no idea how hard and challenging that process was going to be for Alex and our family.
Alex came out of the induced coma. It took days for him to awake and respond. Therapists came and move him around. He had to relearn how to talk, how to walk, he even had to learn how to swallow! He was on feeding tubes and was being given shots in his stomach. That healthy boy in the picture running the Peachtree Road Race was a shell of a figure. Alex went from 170 lbs to 122 lbs. You could look in his eyes and they looked blankly back at you. He started to get stronger but there wasn’t a glimpse of the Alex we had known. But he was alive and for that we were thankful. We knew we were going to have to work very hard to get OUR Alex back! We were able to have him recover at a rehabilitation facility – The Shepherd Center. Later, he did outpatient therapy at Shepherd Pathways. Alex finally came home in June. Our boy had been hospitalized and in treatment away from home for 144 days!
Others thought since Alex could come home that he was recovered. We figured out that people thought encephalitis was like pneumonia – and that once you got stronger you were better. Alex had gained wight and looked stronger. He looked more like himself – yet he wasn’t yet himself. We realized that our real journey had only just begun. Alex was still recovering. He was well-enough to leave rehabilitation but was not well enough to take care of himself, drive a car, or return to school. He was hit with PTSD, panic attack, anxiety, and OCD. Our confident, athletic college freshman was now terrified of noises, bright lights, restaurants, being alone and spent most of his days crying and upset.
It’s now our 1 year anniversary from the time Alex got sick. Most things have improved. He is doing remarkably well physically. His cognitive impairment is mild. His memory is intact and great. His short-term memory is good. He has not had any seizures. We plan on him attempting to complete the 2020 Peachtree Road Race. Every day is a new day. My husband and I joke that every day we start over like the movie Groundhog Day. Alex is still dealing with OCD and anxiety. The panic attacks have diminished. He is able to do an online class. Belmont has been great in working with him and allowing him to continue his education at home (its not cheap though). Alex still has inflammation in his brain. It is believed that he developed a post-infection encephalitis. He has had IVIG. We are working with several different sources to figure out how to get all of the inflammation gone. We have taken Alex to see Dr Arun Venketesan at John’s Hopkins and he has been a wonderful source for us. Our family works around the clock to get Alex to speech therapy, occupational therapy, and personal training. We have his voice teacher come to our house. He takes lessons with his guitar teacher. He has a mindful meditation therapist work with him three times a week. He frequently visits a massage therapist, behavioral therapist and a psychologist. He IS improving. Somedays he understands the importance of his paths and goals; somedays it is harder for him to understand. Our family motto is “day by day”. Alex is now 20 years old.
He has continued to make music. When we hear him sing and play guitar we hear our “Old Alex”. He has written many, many songs. Music has been his therapy. We worked with Jan Smith studios to produce his latest song. ‘Mama Jan’ was terrific with Alex … she was patient with him but also knew how to get the most out of him. We loved our experience with her studio! When we look back at his recovery we want to have something positive – this song is that ‘“something positive”! Alex had to relearn Guitar – which was probably the most frustrating for him. He knew that he had been really good and it was so hard to keep playing when he would mess up or not remember the chords or verses. With the help of a music therapist, he persevered and pushed on. His song ‘Band Aid” helped him deal with his relationship. His girlfriend initiated a nasty breakup, knowing he had a brain injury. She would get mad at some of his actions, even though we tried to help her comprehend that his decision making was impaired. It was painful to hear her say things like “the old Alex would never do that”. He survived the break-up. He survived encephalitis. He is strong.
We hope that his song “Band-Aid” gets played and shared over and over as a reminder that good things can still come out of difficult situations.I want him to be able to look back and remember that he was able to write songs and make some great music while he was recovering from his brain injury. I want to be able to look at his picture hanging on the wall and replace it with a 2020 photo of him walking OR running the Peachtree Road Race.
In honor of World Encephalitis Day, we wanted to share Alex’s music and his story. We have been inspired by so many that have shared their story with The Encephalitis Society, and we wanted to return the favor. Thank you to the greatest source of knowledge for us during this journey – The Encephalitis Society!