Care4Conway: THANK YOU!!

Wednesday, November 14, 2007

THANK YOU!!

Greg and I want to thank everyone who turned out tonight for the Chevy's event! Several people who couldn't make it sent us their love. The staff at Chevy's said they'd never seen a crowd like that for one of their fundraising nights. People who came in said they had trouble finding a parking place and at one point there was a 30 minute wait for a table (and we knew most everyone there!). We lost count somewhere after 130 people! We especially want to thank our dear friend, Carol Stadler, for coming up with the idea and organizing the whole thing. What an amazing blessing to have so much love shown for our family! The best part about it was getting to see so many people who prayed for Connie, the people who cried with us, celebrated with us and continue to keep him at the top of their prayer lists. We know that the baby steps we see every day are the miraculous result of such efforts on your part.
Love,
Greg and Erin

ps. pics to follow. I intended to take a bunch but got so busy gabbing with everyone that I didn't get very many!

2 comments:

Anonymous said...: Erin & Greg,

The Kilkers were so happy to be with you all last night. What a tremendous turnout. Thank you for letting us be a part.

Prayers for you all

Helen Kilker; November 15, 2007 at 1:07 PM
Unknown said...: Erin & Greg - you are right, what a tremendous out pouring of love and support for Connie and your family. It was wonderful to meet your family and to see the gang from Harris.

Don't worry, we're already working on ideas for the next fundraising event.

Hugs...Carol; November 15, 2007 at 2:14 PM

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.