Care4Conway: Surgery cancelled

Friday, July 13, 2012

Surgery cancelled

Conway threw up again before bed and the apple juice from very early morning. We were told to bring him in and they'd reassess. We got there and told the nurse who didn't seem overly concerned and said it would be anesthesia's call. The fellow and another doctor came in and heard all about it and didn't see any reson not to proceed. He has no temp, sign of infection or any other systemic issue. His labs from yesterday were normal and show no elevated counts or problems with electrolytes. They paged Dr. Bove to fill him in and he feels it is unsafe to proceed at this time. Greg is ecstatic and relieved. I can't help but be disappointed. Of course I don't want him to go through a risky "elective" surgery if he is compromised in any way, and in my head I know that this is a blessing in disguise and today just wasn't the right day for this. But my heart is sure heavy, knowing we'll have to do this all over again, only now it being more likely that he'll have to start kindergarten late and all that goes along with the travel details, etc. I have a new job this school year, too, and am pretty nervous at the prospect of needing time off before I start! I know his safety is number one, but these are real concerns that I can't help but worry about. He was so disappointed he wasn't getting his heart fixed today, and Dr. Bradley even came by to visit, not knowing it was off. We joked that this was the second time Connie's invited him to the dance and stood him up. The last time was in the cath lab in '09 when he attempted an ablation for the first time. Now we wait to hear from his schedulers, but they advised us to go back to St. Louis. We were told we'd know more by 11am about when he can be put on Dr. Bove's schedule. He was very sorry. I feel bad for him, but sure respect him for making such a difficult decision.

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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.