Care4Conway: We Have Arrived!

Tuesday, July 10, 2012

We Have Arrived!

We made the trip up to Ann Arbor in about 8 hours today. Only two stops and no traffic. Thank you for all the prayers for safe travel. We did happen upon two accidents that we narrowly missed. One was a large object that went through someone's windshield, and another was an overturned semi on an off ramp moments after we exited. Here he is posing in front of the Con-way Freight headquarters located across the highway from our hotel. How cool to have a building named after you!

We're watching the All Star game now. Or rather, I'm watching the game now. Connie's been bowling in the hotel room and reading his Curious George Goes Bowling book. Tomorrow we plan to go to a nearby lake that has a beach, swimming area, splash ground and boat rentals in the morning and then bowling in the afternoon. If there's time, we're going to hit Pinball Pete's arcade for some skee ball. Thursday morning we report to U of M Congenital Heart Center promptly at 9am and have been told to expect to stay until 5pm. Connie will have numerous tests done including EKG, X-ray, echo, clinical exam with both a cardiology fellow and Dr. Ensing (cardiologist), pacemaker check, labs; and appointments with Drs. Bove and Bradley, and a member of the anesthesia team. When the nurse from the heart center called yesterday, she said that if all goes well, Connie should be inpatient for about a week. She said conduit changes usually spend five days, and the pacemaker will probably add two more days. Your continued prayers are so appreciated! We find strength in knowing God has a plan for our dear boy and while we have an amazing team caring for him, God is in control.

3 comments:

H. James said...: So glad you've arrived safely. Hoping for an easy day tomorrow. Hugs to you!; July 10, 2012 at 8:44 PM
Anonymous said...: Thanks, Erin! I love the picture. Yes, God is in control, and I know he hears our prayers. Love, Sr J; July 10, 2012 at 8:44 PM
Yvonne Mallon said...: So glad you arrived safely. Praying for a quick and smooth recovery. Call me sometime or fb message me. I would like to know what Dr. Bove says about the complexity of a conduit change in a child with LTGA. I know it is not like having the DS but would like to know what he says about it.

thanks,
Yvonne; July 11, 2012 at 5:06 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.