Care4Conway: Congenital Heart Night at Busch Stadium

Monday, May 28, 2012

Congenital Heart Night at Busch Stadium

Connie was able to get in two naps Saturday before game time so he was ready to go! Unfortunately, the weather was very warm and our seats were directly in the late-day sun. He spent a few innings out near the concession stand in the shade, but after that was happy to be in the seats and clapping and participating. We sat right next to several heart friends including Averi, Maggie and Abbie Lynn. Averi and Maggie will be attending Camp Rhythm with Connie this summer and Averi will also be having open heart surgery very soon to replace her homograft. I'm so grateful that we have met so many wonderful families on this journey and that he'll grow up knowing he's not the only one battling this disease.

The game was rather boring, as the Cards were shut out 4-0 by the Phillies. The highlight of the evening was definitely getting to talk to Dr. Bromberg, his cardiologist. He was seated a few sections away with some other members of his office staff. We joked about how the echo technicians all draw straws when Connie is in the office because his anatomy is so challenging to view and measure.

I just love this one. It shows so clearly what a connection Dr. Bromberg has with our boy. Some doctors just talk to the parents. He always asks Connie questions and has fun with him. It's no wonder why he's Connie's favorite and why Connie has named Mercy Hospital, "Dr. Bromberg's Hospital."

Our next step, according to Dr. Bromberg, is to call his office tomorrow (Tues.) to confirm the receipt of his cath information from Friday and that they forward it on to Michigan for Dr. Bove's review. Then we wait to hear. Please pray that his surgery date will be soon, so that he has time to heal enough to still go to heart camp and that by the time school starts back up he will have no restrictions. We take comfort in knowing that God's timing will be perfect, but as parents we sure think we know what's best and have a hard time letting go and letting God.

2 comments:

Doktorpaulie said...: Praying for Conway & Averi. On the daily list. Greet the dawn every day.

Paul Bailey; May 28, 2012 at 11:56 AM
Anonymous said...: I love the pictures! I am praying that all goes well. Love, Sr Josephine; May 29, 2012 at 10:01 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.