Care4Conway: Anniversary

Sunday, August 29, 2010

Anniversary

What a difference a year makes!
After his first surgery

Post-op 2009 repair

Friday was the one year anniversary of Connie's mitral valve repair and radiofrequency ablation at the University of Michigan. Yesterday marked three years since the big double switch, in which his entire bloodflow and structure of his heart was altered. Many of you who have been following his story since that time remember what tremendous complications and setbacks he suffered in the days and months that followed. It is truly remarkable to see him today, doing what any other three year old can do. Instead of laying in a hospital bed this time of year-as he's done two of the three years he's been alive-he's swimming, kicking soccer balls on the sidelines at Mookie's games, quoting lines from Max and Ruby, counting to 30, using his manners and enjoying being a little boy. I almost cried earlier this week when his preschool teacher told me that he's "ahead of the curve in a lot of areas". She went on to say that he's the "little model of the class" and that she points to Connie to show others in the room how to do things or how to behave. Back in 2007 we were praying for God to take him and put an end to his suffering and now we are just in awe of the blessing he's been in our life. We know that his future is uncertain and we've definitely seen how quickly kids like him can deteriorate, but we try to make a conscious effort daily to soak up every special little part of him, even when he's being a stinker! Here's part of the "thank you" we sent to Dr. Bove to mark the anniversary.

Yes, he LOVES pickles and when they are gone he apparently likes the juice!

Wearing sisters rollerblades with no pants on. He's gonna hate me for this one someday!

1 comment:

Annie Whitelaw said...: I have been following Conway's story since the beginning and I could not be happier that he is doing so great. I check back often and it makes my day to see pictures of him so happy and healthy!; September 10, 2010 at 9:10 AM

Conway's Heart Story

Conway's Heart Story

Conway David Beckemeier was born on March 3, 2007. His heart defects went undetected during pregnancy and he was diagnosed at two days of age with L-TGA, a large VSD, sub pulmonic stenosis and Ebstein’s Anomaly. Just before turning six months of age, he underwent open heart surgery to reroute the bloodflow in his heart. Called the "double switch", this procedure is the most technically challenging for pediatric cardio-thoracic surgeons to perform. The version of the double switch that Conway received on 8/28/07 was called the Rastelli-Senning with VSD closure and sub pulmonic resection. He suffered a grand mal seizure following the surgery that lasted over an hour and had several other post-op setbacks including surgical heart block, which required another operation on 9/18/07 to insert a pacemaker. Following surgery and such a long hospital stay, Conway developed an oral aversion (he would not eat) and he was 100% NG tube fed for eight months. He also lost muscle tone and required both physical and occupational therapies. In April 2008, he had a cardiac cath and attempted balloon angioplasty on his pulmonary arteries that did not work. Although his recovery was very long, he had a solid year or so of being a "normal" kid . Then in May of 2009, it was discovered that Conway was having rhythm disturbances, specifically atrial flutter. His pacemaker allowed it to go undetected for several weeks until he showed signs of heart failure and was admitted to the ICU for a week to be placed on IV heart meds and undergo cardioversion on 5/6/09. He went home and his heart function started recovering when he had another episode of flutter (6/16/09). This time, he was again hospitalized and put on IV milrinone, but he converted back to normal sinus rhythm by himself. At that time he was placed on the anti-arrhythmia drug, amiodarone. On 7/22/09 he had to be cardioverted again for yet another episode of flutter. The following week, he got worse instead of better. His cardiologist did a full work up and it was determined that his aortic, mitral and tricuspid valves were all leaking worse and were felt to be the cause of his heart failure. On 8/24/09 he had a cardiac cath and attempted ablation. The electrophysiologist was unable to induce a single arrhythmia. Then, just two days later, he went into atrial flutter on his own. He was placed back in the cath lab where he underwent mapping and a total of 17 burns were made to try to knock out his arrhythmias for good. The next day, 8/27/09, he had his second open heart surgery to repair his mitral valve called ring annuloplasty. He also had a partial Maze procedure done. His surgeries are performed at C.S. Mott Children’s Hospital at the University of Michigan (Ann Arbor). This time he was discharged just six days later! His Left Ventricular function improved drastically. In December 2010 we noticed he began getting more winded during physical activity. A January 2011 cath showed that he is outgrowing his RV-PA gortex conduit, but he was not symptomatic enough to warrant intervention. In April 2012 Conway’s fatigue increased and an echo at the end of May revealed that the ratio between the right and left sided pressures has gotten too high and it is time to replace the homograft that was placed when he was five months old. He had a cardiac cath on 5/25/12 which confirmed the echo findings. He had surgery on 8/8/12 to replace his pulmonary valve and RV-PA conduit, add an additional pacing wire to his left ventricle, and change his generator to a bi-ventricular model which is shown to preserve function and help the heart muscle pump more efficiently/effectively.