Care4Conway: Tonight's the Big Event!

Wednesday, November 14, 2007

Tonight's the Big Event!

Come celebrate Connie's amazing journey with us tonight at the Chevy's Fresh Mex St. Charles location (you can see it from Hwy 70 near the Zumbehl exit)! A portion of the proceeds will benefit Conway's medical fund to help pay for his RX's, doctor's visit copays and insurance deductibles. One of us will be there the whole time (we'll take turns so that someone can stay home with Connie). We can't wait to see you there!

Brother is still having lots of trouble with the morning feeds. This morning he threw up the entire feeding again. He finally had a bm last night so I know things are finding a way out, it's just that he doesn't keep hardly enough down to leave anything to get rid of.

He and Mary Kathleen were so cute yesterday. Here's a video.
View this montage created at One True Media

View this montage created at One True Media

Connie adoring Mary Kathleen

3 comments:

Anonymous said...: I hope you have a great turnout tonight. If we lived anywhere near you, we would surely be there! Great site, by the way. I look forward to reading everyday. Continued blessings.

Stacie Kuhlman; November 14, 2007 at 1:06 PM
Anonymous said...: Erin,
The video is darling. The children are so precious and you have much to be thankful for. I look forward to Chevy's tonight - hope to meet many of your friends I only know thru the websites and their comments. Prayers always and love Mom; November 14, 2007 at 1:33 PM
Anonymous said...: Erin, Greg, MK & Connie,
Thanks so much for sharing the great video. Your kids are soo cute! Please know that we are with you in spirit tonight, wish we were closer to be with you tonight at Chevy's. I hope it's a great turnout and an opportunity to see so many of your friends and family who have been with you every step of this journey.
We love you all, Caryn, Adam and baby Claire (guess she's not much of a "baby" anymore - it's hard to believe she's 15 months already!); November 14, 2007 at 1:43 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.