Care4Conway: 2nd/3rd Cath Update

Monday, August 24, 2009

2nd/3rd Cath Update

Dr. Aiyagari just called. Connie is doing well. He is receiving a blood transfusion now because he lost a lot of blood when an arterial line decided to "work it's way out". Other than that, it sounds like fabulous news to us. In the doctor's words, things look better than expected in most areas. His left ventricle function is better than expected and there is no LV dilation! The aortic valve is leaking a "mild to moderate" amount only, not necessarily even needing to be addressed surgically. The mitral valve is as expected and leaking a "substantial" amount. That fits with what Dr. Bove told us his plan would be anyway--to attempt to repair that mitral as best as possible in hopes that it will take some of the pressure off of the aortic too. So, all is looking in a positive direction. The doctor says his conduit looks small for him which is understandable since it was placed when he was only 5+ months old. It looks like that will be replaced during surgery, but that will be Dr. Bove's call. He still has stenosis in his right pulmonary artery and branch arteries, but the left is wide open. Dr. Bradley is working now on the electrical portion, trying to get Connie into atrial flutter so they can map it out and possibly ablate it. Please pray that this part goes smoothly and Connie cooperates. It is possible that they won't be able to get him into flutter, meaning they would have less information to give Dr. Bove to use during surgery. Pray that they get him into flutter and can ablate it in the cath lab.

Dr. Aiygari said that there still is quite a bit to do and that he'll be in there for some time. This is not a short process. We'll update when we hear more. Thanks for your prayers.

p.s. Greg and Mary Kathleen will be arriving at Applebee's on MidRivers Mall Drive around 5pm tonight for the Care4Conway benefit to help offset the cost of the trip and insurance premiums. They'd love to see you and get a hug from you!

1 comment:

Unknown said...: Erin, you area all in our thoughts and prayers. Sending you and Connie lots of hugs! Love you. Tim, Michelle, and the girls.; August 24, 2009 at 4:12 PM

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.