Care4Conway: 9/30/12

Monday, October 1, 2012

Cardiology Update

It has been a while since the last post, so there are a few things to update everyone on. First, Conway saw Dr. Bromberg today to check up on his ticker. The report was glowing. His LV function is "brisk" and the RV pressures are completely back to normal. Valve leakage on the mitral, aortic and tricuspid is minimal and not a significant or imminent threat at all. In fact, the doctor said this is the first time he can remember that he couldn't feel Connie's liver (a sign of heart failure that has improved)! He wasn't needing as much power as the pacemaker was supplying so that got turned down to preserved battery life as well. He's happy with his energy level and stamina and sent us on our way until next April. Speaking of April, that is a going to be a big month for us. Mookie will receive her First Holy Communion, Karsten celebrates his third birthday and we will welcome a new addition into the family. I'm a little past 12 weeks along. We hope to find out just after Thanksgiving if it is a boy or a girl. After today's cardio appointment, we stopped by Mercy Eye Center to pick up Conway's new glasses. He still looks super cute, even though we said no to the sport goggles that he was hankering for. His Primary year is 1/8 of the way complete already! He loves school and his teachers. He talks about it a lot and I've even found him playing school at home... something I never dreamed I'd see. It was so cute how he set up math centers and a science lab and he and Mary Kathleen were trying to teach Karsten. He's also taken a new interest in drawing and writing. His handwriting is still pretty rough, but is improving by leaps and bounds just in this short time since the start of school. He walks around the house with a small notepad and pencil asking what he should draw next. He looks like a mini-reporter! We're bracing for cold and flu season. We'll all be getting flu shots soon. He's already had a hint of a cough and needed some breathing treatments. Hopefully his new and improved cardiac function will help him fight off bugs even better. Thank you for continuing to keep our family in your prayers. Conway's prayer warriors are such a blessing to us!

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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.