Care4Conway: 4/5/09

Monday, April 6, 2009

Easter Egg Hunt

Connie and Mary Kathleen attended the big Webster Groves Easter Egg Hunt at Bethesda Orchard this past Saturday. Great Grandma O'Leary invited us and living with Bunny Girl, we never pass up an opportunity to visit with the Easter Bunny himself! First was the hunt for 1-3 year olds. Connie wasn't sure what all the fuss was about as last year he was not walking and not even eating and pretty much confined to the stroller the whole time. This year he gladly picked up eggs but was much more concerned with shaking them and finding out what was making that noise than actually scooping up as many as he could. He found about four or five and then made his way over to Great Grandma to help him with opening them. Once he discovered there was candy inside he was thrilled. He LOVES chocolate!

Then it was on to Mary Kathleen's turn, the hunt for 4-8 year olds. I use the term "hunt" loosely. The children did not have to search for eggs. The eggs were just strewn about the lawn so all they had to do was pick them up. Given the fact that she is not aggressive and was at the back of the pack, she did not get a single egg! 3000 eggs were scooped up in a "record" (according to the announcer) 52 seconds. The child was obviously distressed about this and was not herself. I'm not making excuses for her because she made some poor choices in her behavior, but I do feel sorry for her at the same time. It is so hard to be a parent! Unfortunately we had to leave the egg hunt early and miss out on the raffles and snacks. There's always next year, I guess!

Here are some pics from the day:

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.