Care4Conway: All Star Parade

Tuesday, July 14, 2009

All Star Parade

So the All Star Game returned to St. Louis and, although we had no tickets, we didn't want to completely miss out on the festivities. After lunch with Great Grandma O'Leary and a short visit, I headed downtown with the kids and the double stroller ready to take on the crowds and fun. We found a meter close by and only had to walk three blocks. We found a second row spot to camp out in and watch the parade. Unfortunately, neither of the kids is old enough yet to really understand or get into the excitement of the event. Mookie was looking forward to a parade and she assumed (as did I) that it would at least be of the caliber of the O'Fallon 4th of July parades that she has become accustomed to year after year. She was disappointed when not one single sugary bit of sustenance came flying at her or anyone else for that matter. And by the time the parade participants got to our end of the route, there were few souvenirs left to be thrown. A 12 year old girl in front of us caught a little soft logo ball that was thrown and gave it to Mary Kathleen. Mary Kathleen sat on my shoulders and Connie spent most of the time playing with the iPod in the stroller! Both of them fell asleep a little more than halfway through the parade. On our way back to the car, we ran into Aunt Barb and her gang of kids and grand kids. We chatted with them for a minute and then headed on back home. After I got everyone safely packed in the car and navigated my way (without a GPS) back to Hwy 70, I honestly felt like Superwoman or something; like I could take on the world!! I don't even like going to the grocery store with both of them so I was shocked that taking them to this wasn't a complete disaster! The camera ran out of battery before the current all-stars even drove by, but I managed to get a few pics. Enjoy!
The Wizard and Bruce Sutter

Is it naptime yet?

Mookie with her one and only souvenir (courtesy of another fan)

Pittsburgh's mascot

1 comment:

H. James said...: Looks like fun, SuperMom!

Dare I mention the Homerun Derby and a certain Milwaukee Brewer, Prince Fielder?

It was BIG news around Wisconisn!

Glad you are doing well. Keep up the supermom work!; July 16, 2009 at 9:14 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.