Care4Conway: 9/27/09

Saturday, October 3, 2009

3rd Annual Averi Budde Foundation Benefit for Children's Hospital

Today we went to Blue Springs Ranch in Bourbon to a fundraiser for Children's Hospital's CICU and 7W. It was in honor of Averi Budde, a "heart friend" of Connie. She and her twin sister were there along with four or five other heart families we've met through the St. Louis support group, Heart 2 Heart. They had a lot to do and I'm pretty sure we did just about all of it! The kids had a blast. I think Mary Kathleen's favorite thing was the bounce houses and Connie loved the barrel rides. He called it a choo choo train. Mook rode a horse and even up in a helicopter! Can you believe it? After watching us take off, Connie got a little upset thinking I was disappearing. The food was great and so were the friends! Thanks Isom's and Budde's! What a wonderful event!

Mookie in a covered wagon

Connie and his heart friend Maggie

Finally not afraid of bounce houses!

In a barrel ride with Daddy

Wednesday, September 30, 2009

Getting Better and Better

Connie keeps making noticable improvements almost daily! He's now telling us when his cup is "empty" instead of just asking for "more". On the steps of the playground equipment, he's learned to use the railing to go up instead of crawling. He still crawls about 40% of the time, but it is progress! I even notice when he sits down at the top of the slide, he's doing so in a more fluid motion now where before he sat down way back and scooted up to the slide. He's figured out how to bowl and play golf on the Wii and can use the remote without assistance! He's such a little smarty :) He's running more and doing that thing toddlers do where they keep repeating themselves until you acknowledge them! Annoying, but still progress. I still marvel that it has been less than five weeks since his surgery and he's already feeling and developing so much better. God is so good!

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.