Cheering on - By Colin Alesse (Ryan's Father)
My son Ryan was diagnosed with Ventricular Tachycardia in May of 2009. To date, the exact reason has not yet been identified. It had been just over two and a half years before I was able to write about Ryan and share my story in hopes that it will help someone else find comfort. During those first years I could not help but cry when I heard an ambulance siren or feel the deep panic when my sons phone number showed up on my caller ID.
Thursday, May 21, 2009, started out a normal day with our family of five; my wife Jennifer and our three boys Kevin, then eighteen, Ryan thirteen, and TJ, ten years old. Today would test our scheduling skills. Home from work and school with just enough time to eat and catch up with the day's events. Tonight we have to be in three different places with each of the boys. So the plan gets finalized. Jennifer would take Kevin to Career Night at the High School. I will drop off Ryan at Boy Scouts, and TJ will go with me to our Cub Scout meeting. It's a big event for the cub scouts as this is our season wrap up and "Cub-apolis", an Indianapolis 500 race inspired race with seventy-five plus Scouts running laps in cardboard boxes all individually decorated. Weeks were spent planning, preparing and it was finally here. Will it go ok? Will the Scouts have fun? Are the parents going to behave? Sometimes competition brings out the best in some and the worst in others. As the evening unfolds, the excitement and fun is evident in all of the sweaty red faces. The Scouts are rewarded for their achievements and the leaders breathe a sigh of relief as the day comes to an end with out incident.
My cell phone rings and it's my friend Tim on the other end. Hey Colin you better come over to the Church parking lot. Looks like Ryan collapsed from dehydration while playing capture the flag. Be right there Tim. TJ we need to go NOW. Hurrying to the Boy Scout meeting I begin thinking of past events where we have had to keep a close eye on the Scouts from becoming dehydrated. It can easily happen during a day filled with fun. We arrive within minutes and find Ryan laying in the parking lot and looking much worse than I had imagined. As I begin talking to Ryan, my First Aid training starts to kick in without even knowing it. Legs are numb, skin is cold and clammy, and his heart is pounding. He had thrown up all over. I shout to Brian, "Call 911 we need help now." At this point, everyone realizes this is more than dehydration and Ryan is getting worse. The EMTs and Police arrive in minutes. I am pulled away from Ryan to begin to recounting what has just happened. Quickly it progresses to what seams to be a hundred questions. Does your son have a past history? Where has he been? Do you know if your son is taking drugs? This looks like he may have taken Ecstasy. You know, "E" is becoming a real problem with teens. No Ryan is not into that and we know his friends. That's not it. What is going on? Ryan is now on the stretcher and in the ambulance. We are going to take your son to Northwest Community Hospital and figure this out. Both the ambulance and I speed off. Please pick up, please pick up. No answer. The sirens wail on ahead of me. Is this really happening? What's going on? The ambulance makes it there well before I do and now I struggle to find out where to go.
Fear now begins to take its hold. I am frantically trying to reach my wife and son Kevin at the High School. Once, Twice, Three times. The calls go unanswered. Why won't you pick up? The school is notoriously known for being a cell phone dead zone. Tim, can you take TJ home with you. I am going to the hospital and I can't get a hold of Jennifer or Kevin. You got it. No worries take care of Ryan. Thanks.
Are you Dad? Yes, yes I am. That's my son. They begin cutting off his remaining clothes with a whole team scrambling around his bed hooking all sorts of instruments to his body. Your son arrested in the ambulance ride over, but the EMTs were able revive him. Again, I have to describe what lead up to this, past histories, drug use. What's going on?
He's crashing again. It's like I am seeing a medical program on TV as I watch my son intubated, followed by CPR, and injections. Everyone, CLEAR. Dad we need you now. The nurse grabs me by the arm. Dad you stay here by his foot and keep taking to him. You don't let him go and we will do our part. Keep talking, he needs to hear you and let him know it's not time for him to leave. The doctors continue doing CPR, assisting his breathing, and increasing the levels of the defibulator with each shock. He's flat lining and nothing is working. I was just cheering my youngest son to win a race, now I am cheering another son to live. Ryan you need to fight. You can do it. I am here with you. Keep listening to me you can do it. Fight Ryan. Fight. Twenty minutes' pass. The nurse calls out, "I got a pulse. He's back with us. It's getting stronger." You did it Dad. He heard you. Great job. I am shaking uncontrollably at this point. Relief. Ryan is stabilized. I have to get a hold of Jennifer, still no answer. Finally, I get through. What? Where are you? At the hospital? Are you sure he's ok? Just get here quickly.
My wife arrives and again the story gets repeated. Now the doctor joins us and giving us even more details. We need to transport your son to Children's Memorial Hospital so they can figure out what caused this. It's decided that my wife will go in the ambulance with Ryan and I will follow. Ok. Now where is the rest of the family. Hurried calls are placed to my Mom, Kevin, and Tim. I need your help. We don't know what exactly is going on. We'll call you as soon as we find out something more. Now almost midnight, I managed to call my best friend and tell him what has been going on. I totally break down and am sobbing in the car while driving. I have no idea how I made it down to Children's Memorial hospital without getting into a car accident. Arriving at the hospital I head to the ICU where the doctors began trying to figure what caused Ryan to go into cardiac arrest. At two thirty in the morning, Dr Raj sat on the floor at our feet as we listened to him explain what had happened and what they are going to do. Looks like Ryan is stable, but we are going to keep a close eye on him. How unbelievably compassionate Doctor Raj is looking up at us assuring they will do everything they can. My wife and I hold each other and look at our Son. Is this really happening?
In the days that follow test after test are performed each one coming back negative. Great news, but what caused this? After nearly a week in the ICU, it is determined that because Ryan had a recorded EKG showing his heart beating at over 300 times a minute, the best course of action is to have an Implantable Cardiovertor Defibrillator, ICD, surgically connected to his heart and start a course of medicine to allow him to heal and lower his heart rate. Ten days and finally Ryan is released from the hospital with medicine, rules, and follow up visits scheduled. More information and events have transpired then we could possibly absorb. So much information is readily available on the internet. Finding out as much as possible about the functions of the heart, causes of arrhythmias, potential reasons, brings a level of comfort and control. Seeing Ryan alive, smiling, and looking perfectly fine except for the four-inch-long scar on his chest quickly snaps me out of dwelling on all that has happened. It is clear early on that there will be no way I can be with Ryan at all times so we make sure he can answer any question about his condition.
In November 2009, Ryan is at a youth group meeting when I receive another call. Colin the ambulance is on the way. Ryan is awake and talking but his ICD went off. We follow the protocol taught to us and call the cardiologist and then go to the hospital. One of the he EMTs recognized Ryan from May and they are able to catch up on what has happened since then. Ryan is in control with the help of his ICD. It is confirmed as an appropriate shock. We are released from the hospital after checking that the lead wires are ok and the device is working fine. We decide to have genetic testing done with hopes that it would reveal why. No luck. Negative. Ryan continues to amaze us how strong he is physically and mentally. Ryan is not the typical baseball playing type of boy. His interests were always more artistic in nature and he started planning the Alto Saxophone in junior high. Marching Band in High School is his love. In July 2010, during summer training for Marching Band, his ICD goes off. Again, we are back in the ICU to see what is going on and why Ryan keeps having arrhythmias. More tests. All negative. Ryan's medicine is switched up to include a calcium blocker along with a beta blocker. With this new combination and the ICD, it is our best bet.
Ryan has been seeing a therapist since March of 2011 and we are continuing to heal, grateful each day to have all of our children with all of life's ups and downs. In October 2011, we were able to go to a support group / conference in Ann Arbor, Michigan, the Young ICD Connection, and take another step forward. Next year Ryan hopes to tell his story and meet more people like him. In the beginning we were not sure that Ryan would have any kind of a future. Today, our doctors seem like family and check-ups are more like reunions. As a parent, I will always have concerns, but now they are pushed to the back of my mind by hopes and dreams; watching our son grow, learn to drive, graduate, go off to college, and beyond. I am so grateful for all those around us and those who we have meet throughout the years.
During 2011-2012 many of the life changing stories being told were collected by Helen McFarland, RN at University of Michigan Hospital and eventually published in a book, "ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories". In 2012, Ryan spoke at the Young ICD Connection. That same year Dr. Gregory Webster from Children's Memorial Hospital was the keynote speaker at the event. Subsequently that day, we had lunch together and discussed needing to have a resource like the Young ICD Connection in Chicago. Later that year the Koth, Alesse, and Kirl families along with Dr. Webster began laying the foundation for what is known today as the Chicagoland Cardiac Connections, CCC, Chicagoland's first community for children and young adults with pacemakers and implantable cardioverter-defibrillators (ICDs). We continue to grow each year and help connect young patients to others like them.
This story originally appeared in the book, "ICD Connection: Living with an Implantable Cardioverter Defibrillator: A Collection of Patient & Family Stories" by Helen McFarland, RN and published by MPublishing, University of Michigan Library, 2013.