Reflections of 2020... Witnessing A Miracle!
Wow, we were so ready to move past 2020, however our worst nightmare turned into a miracle! We can all agree 2020 was the worst. If anything could go wrong, it did, but our family also got to witness a miracle last year and we are beyond grateful. The year started off rocky for us as we were getting messages about Devon’s ICD going bad and were anticipating an upcoming surgery to replace this device. Then Covid happened, so we had to postpone any procedures that were not an emergency. Up until the end of April, his device was still functioning so it was not considered an emergency.
On April 27th, we received a phone call from Devon’s doctor stating that his device was not functioning properly and he was at risk to be shocked. We were instructed to go straight to the hospital to have the device turned off and to make plans for surgery. Because of the virus, we had to go to KU hospital instead of Children’s Mercy. Once there, they told us they were going to remove his old device and lead wire and replace it with a new, better device. This device was called an S-ICD. It would be implanted in his side and the wire would not go directly into his vein so his restrictions were going to be even less. This kid, who was told at the age of 10 he could no longer play certain sports, do push-ups, pull-ups, or bench press was going to be able to do those things after we got his new S-ICD. They informed us the surgery had less than a 3% chance of any major complications and recovery time was approximately 3-4 weeks.
On April 28th, we watched them take him back for surgery and I could not shake this awful feeling I had. Every time I play it back in my head, I get the same feeling in my stomach. After several hours of no word, we became a bit worried. I will never forget watching the nurses run into the waiting room frantic and yelling for the parents of Devon Parrott. They told us the major complication they had warned us about had just happened. While they were removing the lead wire from his vein, a portion of it was stuck on his heart and when they were pulling it they tore two holes in his heart. They did not know this until the sack around his heart filled with blood and his heart stopped beating. They called in the open heart surgeon and he had to repair the holes. He coded for over 13 minutes! The nurses told us he was not breathing on his own and that they did not know if he would wake up. And if he did, he may not be the same. I had so many thoughts and emotions and, his dad was trying to be strong for me. An hour or so after that, the surgeon told us he repaired the holes but only time would tell what was next. I begged and pleaded and prayed. When we finally got to see him, he was not awake, not breathing on his own, but was making some involuntary move-ments which gave the doctors hope. They told us not to panic until it had been 24-48 hours. He needed to open his eyes, squeeze our hands and wiggle his toes. We would know he was out of the woods when he could tell us his name.
We had to go back to the waiting room during shift change, during this time I had some special messages from friends. One was a prayer someone recorded, praying for Devon before his surgery, the other two were pictures of a double rainbow over Lincoln. One message said, “there is a big full rainbow in Lincoln and I believe it’s for Devon.” At this moment I felt hope. My husband was telling me that Devon was strong and would come out of this stronger. When we got to go back to see Devon every hour we saw an improvement. At around 4 a.m. Devon woke up and told the nurse his name and that I was his mom. This was the most beautiful moment in my life! The doctors were amazed, and could not believe how fast he was recovering. They never expected him to wake up so soon! He was eating, walking and talking and only two days after his surgery he was taking a dual credit final. He had a little trouble with his short term memory and motor skills at first, but those things came back too. Once he had fully recovered from that, in June, he went back to the hospital to have his new device implanted. That was very hard on us, but he came through the surgery with ease.
Our 8th Annual Devon’s Beat 5K & dance/auction got pushed back three times but finally took place on June 12th & 13th. We had lots of great donations and were fortunate once again that the Lincoln VFW Post 5925 let us have our dance and auction there. We raised over $15,000. Devon’s kicking friend from St. Louis came again and he, his brother, and another close friend chose to jog/walk with Devon this year instead of competing. We had 3 more heart screenings in 2020 too. The first one, in July, was at Thayer, MO. This was in memory of Coach Bryan Tate. He passed away suddenly from an unknown heart condition in 2019. We got to meet his brothers and wife. We instantly felt connected to them. We screened 63 kids, five phone calls were made to parents and three kids were asked to follow up with a cardiologist. Thayer raised over $3000 to help pay for these screenings. In September we went to Windsor, MO, one of our rival schools. We screened 58 kids, five calls were made four were seen by a cardiologist. Two of those children had life threatening heart conditions. One had Long QT like Devon, this was the first time we found another kid with the same condition as his, and we were so thankful they came. The next was a 12 year old boy, a rival of Dawson’s on the court and field. Chase Hampton had WPW (Wolfe Parkinson White). This is a dangerous electrical problem that needed attention. He got into the doctor pretty quick and a month later had a procedure to correct the problem. He is doing well now and got to return to football and is enjoying his basketball season now. His parents are so thankful they took him to the screening and had no idea he had a heart condition until then. With the help of Jessica Heany, Windsor raised over $3000 for that screening. This inspiring screening helped us get our next screening started. In October, we hosted a “Rivals On The Field” two-day heart screening in Lincoln. We had kids from Lincoln, Cole Camp, Windsor, Warsaw, Tipton and Sedalia come. We screened 109 kids. With the help of Jessica, the Hampton family, Tipton and all of the parents who donated their $20 refundable deposit, we raised over $7800 for this screening. We had screened 948 kids so far and our next stop is Ozark, MO. Devon’s brother plays baseball on a travel team and we are going to co-host a two-day event with the Marucci Midwest organization and Zone 1. In December, these organizations held a homerun derby and all of the proceeds went to Devon’s Beat. We are excited to take screenings there.
What’s next for Devon? Like I said earlier, Devon’s new device is going to free his restrictions up a lot. It took us a long time to get this device and some pain and heartache, but once he fully recovered he got busy. He continued to kick and punt and went 16 for 16 with extra points for the season. He punted very well and confessed he wanted to focus more on that for college. He also got to play other roles on the team this year and got to throw a touchdown pass after he faked a field goal. He also played some safety and wide receiver. He even caught a two-point conversion pass and had a blast! In October, he went to Quincy University for a camp and got to have some 1-on-1 with the kicking coach. We first heard about Quincy when we went to the heart screening in Thayer. Coach Tate’s brothers both played there. Devon loved the campus and coaches but it was a bit far for me. He got invited back for a visit in December and they made him an offer. He was certain this was the place for him, but we advised him to think about it more. At this point, after meeting the coaching staff, I was convinced this was the place for him too. He committed December 7th, and is very excited to start that journey. His kicking friend from St. Louis, Drew Lenzen also got an offer from Quincy and he committed as well. They are going to have a blast and we can’t wait to see them punt and kick. Devon is in the middle of his last year of basketball and is having fun and doing well. It is so fun to see this group and how well they play together. He will start golf in April and is looking forward to it. Academically, he is currently second in his class and got a 29 on his ACT. Along with an athletic scholarship he is receiving an academic one too. He has been invited to compete for the Presidential Scholarship and we are excited for that.
We are so blessed! It has been nine years since he collapsed in the hallway and we got his diagnosis. It was the worst and best moment in our lives. If we did not know about his condition, he may not be with us today, and these kids with unknown conditions may have found out the hard way. Devon continues to help us spread awareness and encourages parents to get their kids tested.
I hope that sharing our story inspires you! Thank you for everything.
WE RUN FOR THE CAUSE
Devon was 10 years old when he collapsed at school in 2012. The doctor assumed he was dehydrated but asked us if we wanted to do further testing to rule things out.
A few days later we took him to Children's Mercy for an EKG. We were notified immediately that he had an abnormal EKG and would need to come back for more test and avoid all physical activity. We went back to Children's and were shocked by the news we received. Devon was diagnosed with a SADS (sudden arrhythmia death syndrome) condition called Long QT. His doctor told us he was at high risk of cardiac arrest. She said he was lucky to be alive and that he could no longer live an active life and couldn't be left alone for more than a few minutes at a time. We were so scared and Devon was devastated. I did a lot of research in the first few weeks and found out that his condition was not rare and that he was indeed lucky to be alive because most of the time the first warning sign is death. I learned that nearly 4,000 young people die each year from conditions like Devon's. It is 3 to 4 times more common than childhood leukemia. But after reading more about it we also realized not very many people knew about it, so with help from my closest friends and family we decided to host an awareness fundraiser in honor of our son Devon. In less than 5 months we had our first annual Devon's Beat 5k. I continued to research SADS conditions and learned that most conditions were not only detectable with proper testing but very treatable. My next mission was to find a way to test kids for such conditions in hopes to catch very treatable conditions from claiming yet another young life. While researching this i found that there are lots of foundations over the US doing exactly what i wanted to do. They were screening young hearts and finding one in one hundred at risk for cardiac arrest. So in October 2014 we had our very first Devon's Beat Heart Screening! We are coming up on our 6th annual 5k and 4th annual dance and auction. We have rasied over $50,000 and screened over 350 kids. Devon had an ICD (implantable cardio defibrillator) implanted in his chest 7 months after he was diagnosed because he was at a very high risk of cardiac arrest.
Fast forward to July 2015 when Devon got sick and his appendix ruptured. Had we not known about his condition they would not have known what medicines they could give him to treat infections and to put him under for surgery. Certain medications could be fatal. In August of 2015 he went into cardiac arrest at the movies and was saved by his ICD twice. What a blessing for our family, not only did we get the blessing of his diagnosis but his device saved his life.
Now Devon is leading a very active full life. He is 16, has his drivers license, playing basketball, kicking for the football team, playing golf and one of the top in his class. He is involved in Student Council, FBLA and Band. He dreams to be a kicker in college and possibly going to school to become a physical therapist.