Care4Conway: 6/3/12

Tuesday, June 5, 2012

The Date is Set

I couldn't stand the suspense of not knowing so I caved and called Michigan today. I was transferred to Kim, Dr. Bove's secretary. They are an hour ahead so it was already 5pm there and she had shut down her computer for the day and was walking out the door. They are so wonderful there that she turned everything back on and looked in Dr. Bove's notes and saw that he has offered us July 13th for Connie's next surgery. That means that pre-op would be on Thursday, July 12th and Connie would be first case (and likely only case) for Dr. Bove on Friday, July 13th. I'm not superstitious, but I'm also not fond of the fact that his surgery will be on a Friday, the 13th. The good news about this date is that hopefully he'll be fully recovered by the time school starts in late August. The bad news is that he won't be able to attend Camp Rhythm, the heart camp sponsored by St. Louis Children's Hospital. This was to be his first year to go to mini-camp (day camp). Our tentative plan is for Connie, Greg and I to drive up on Tuesday, July 10th and take a day to get settled and check out local bowling venues in the A2 area (We promised Connie we'd bowl in Michigan) before pre-op testing begins on Thursday. We will have a room at the Holiday Inn near the University of Michigan until we can get a room at the Ronald McDonald House next to the hospital. Between the grandparents, I think we've got the other kids covered. Please keep us in your prayers as we prepare for this next step of Connie's journey.

Here's the boy sporting his Dr. Bromberg fan club shirt ("When I grow up I'm gonna be a cardiologist.") and showing off his survivor hat and zipper scar.

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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.