Dennis, September 2005 at age 17
Dennis, September 2004 at age 16
Dennis was born August 31, 1988 and weighed 8 lbs. 11 oz. His pediatrician heard a heart murmur but told us he didn?t think it was anything to worry about. He told us that if he still had it at his 2 week check-up, he would do something about it. So we took him home after spending one night in the hospital. At his two week check up he still had the murmur so he said it needed to be checked out by a cardiologist. He called and made the appointment for us for the following week. He still said he didn?t think it was anything to worry about.
A week later, (a Wednesday) me, my mom and Dennis went to the hospital and spent several hours doing tests - EKG, chest x-rays, echo. I was sitting next the the table they did the echo on and the cardiologist was looking at the echo. She told me to get my mom, who was in the waiting room. The cardiologist told us that Dennis had congenital aortic stenosis and that he was in critical condition and that he needed open heart surgery immediately. His surgery was scheduled for Friday morning. The surgery went really well. He came home from the hospital a week later, on a Saturday.
During that first year, we had fairly regular check ups with the PC. After about that first year, we started seeing the PC once a year. The PC always told us that Dennis would need to have a new valve at some point, hopefully when he was fully grown. As the years passed, she would tell us about new developments?they were using pig valves or human donor valves instead of artificial valves. When Dennis was 5 or 6, she said "I hope we can wait until he's 8 or 9". The next year, she said he's doing great, hopefully we can wait until he's an adult. About 4 years ago, we changed cardiologists. In September, 2002, when Dennis was 14, the new doctor recommended surgery and explained the "Ross procedure". I knew surgery was coming because that last year, we had gone to 6 month check ups.
We scheduled the surgery for December 3, 2002. The surgery went well but Dennis' heart wouldn't beat on it's own. He spent 11 days in PICU hooked up to a temporary pacemaker; finally, just hours before they were going to implant a permanent pace maker, his heart started up on it's own. The surgeon told us that he didn't know how long the donor valves last - it could be 5 years or 20 years.
At Dennis' 4 month post op check up in April, 2003, the PC found a problem with the new donor valve. The following week they tried to open the valve in the cath lab; it didn't work. The valve and conduit had shrunk down. The doctors decided they needed to replace the donor valve. His body had rejected it. His heart had stopped during the cath lab procedure so they hooked him up to a crash cart and took him to PICU until the surgery 2 days later. During this surgery, Dennis suffered a stroke. The surgeon told us he didn't know if Dennis would ever wake up. He also implanted a pacemaker during surgery (just in case he needed it).
Dennis, September 2003 at age 15
They moved him to a different hospital to do hyper baric chamber oxygen treatments. They did 4 of those over the next 4 days then moved him back to the first hospital. During all of this, they kept him in a coma on drugs so they still didn't know if he was brain damaged or in the coma just because of the drugs. He spent a week in PICU.
When they moved him out of PICU, he still wasn't fully awake. He couldn't move his right side. They moved him into the rehab unit and told us we would be there for months of intensive inpatient therapy. That was a Saturday. Ten days later, on Monday, he went home. During that week in rehab, it was incredible to watch his improvement daily. He had occupational, speech and physical therapy in the hospital. Once he got home, he only needed out patient physical therapy for a couple months. He is fully recovered now from the stroke.
I'm so thankful for all of his doctors and nurses; they are absolutely the best.
In July, 2003, Dennis was able to go on a Scout trip through Yellowstone. They hiked 35 miles over 5 days. Dennis got to ride the horse most of the way.
In August, 2003, Dennis was with a church youth group. On their way home from a weekend of river running and hiking, they were involved in an accident that killed four people, 3 in the car Dennis was in and the motorcycle driver they hit. Dennis had bruised ribs and internal bleeding but only spent 1 night the hospital. His cardiologist said he was lucky that he only had his lap belt on, not his shoulder belt and also, the fact that he had a donor valve and not an artificial valve probably saved his life (he would have been taking blood thinners if he had an artificial valve).
January 2006 Update
Dennis is a senior in high school this year and will graduate in June 2006. He is on track to becoming an EMT when he graduates. He plans to go on to paramedic training. He's also looking into training to become a surgical tech.
May 2007 Update
Dennis started having trouble just after Christmas 2006. He couldn't walk up a flight of stairs without resting and he would get dizzy. He saw his cardiologist who thought he probably need a different type of pacemaker. He saw the pacemaker specialist on January 23 who scheduled surgery to implant a new pacemaker on January 29. His old pacemaker just paced the bottom of his heart and wasn't working like it should. He needed a pacemaker that would pace both the top and bottom of his heart. The surgery and follow up appointment went well.
Dennis just finished his first year at the community college. He's planning to apply to their surgical tech program