Care4Conway: Wheels in Motion

Saturday, July 14, 2012

Wheels in Motion

After our day of disappointment, travel and recuperation we are ready to get the ball rolling on plans to get back to Ann Arbor next month. Greg's contact at our hotel said that unfortunately, the UAW is hosting their national convention in A2 that week and getting a room anywhere in town will be next to impossible. They can not offer us the same amount of nights we had remaining, but they did have a late cancellation for four nights, so we know we've got a place to stay through the night of August 10th. We will hope that by that time he is well enough to be floor status, at which time we can both be with him overnight. We may try to get a room at the Med Inn for the 11th through discharge, but I honestly don't know if I can handle stepping foot in there. It just holds so many traumatic memories. We had purchased tickets for Connie and I to fly home in time for heart camp next week, but since things have changed, and since he's growing rather weary of another long car trip, we decided to see if we could change our flights to August 7th and have Greg meet us at the airport in Detroit and drive us to A2. I think it will help his spirits some and keep him out of rest stop bathrooms and hopefully well enough to go through with the surgery next time. Thankfully, it only cost $26 total to make the switch. We got lucky there. On the health front, he hasn't vomited anymore since yesterday evening, but he did have two accidents overnight. He's such a big boy, he even got himself changed and cleaned up. Thank you for your continued prayers. We know that the peace we feel is a direct result of so many lifting us up.

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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.