Care4Conway: Camp

Tuesday, July 17, 2012

Camp

The time has come. Connie is finally old enough to attend Camp Rhythm, a camp for kids who have had open heart surgery. From ages 5-8 children can attend day camp or "mini camp", after that it is an overnight camp located 40 minutes from our house. We are so blessed that he is able to attend after all. It is kind of one of those silver linings of the surgery being postponed. Less than 12 hours from now he will be making friends with 19 other little kids who have been through similar struggles and share the same strength and courageous attitude we see in him. I have witnessed adolescents who have attended this camp for years and seen the bonds that tie and lifelong friendships they form and I am excited for Conway to have that same opportunity. He already knows a few heart friends, some of which will be attending too. There are other heart kiddos we follow online, and over the past six months he has really become interested in them as well, probably because these kiddos have had a lot going on health-wise recently and we've prayed for them often. He is especially fond of Keian and Tim. He is really bummed that these boys live far away and won't be at camp. I'm crossing my fingers that one day we will have a reunion for all the L-TGA families we've grown to love these past five years and these kids and parents can meet. We've cried, celebrated and prayed for these kids during the ups and downs of this disease. Tomorrow, our heart family will grow just a little bigger as we meet new families and children on this journey. Conway is packed and ready to go. He says he's a little excited and a little nervous. I bet after the first ten minutes the nerves go away! By the way, he is all better, finally! Thank you for praying.

2 comments:

Ray said...: How exciting for Conway, he will have a great time. So glad to hear he feels better.
Peace, Love & Gods Blessing; July 18, 2012 at 6:52 AM
Brittany said...: I had the privilege of meeting Conway at Camp Rhythm yesterday! We had such a fun day of carnival games, swimming, throwing water balloons, face paintings, and tye dying shirts! He was so excited about everything that he used both of his cameras before noon! Too funny- you have to look the excitement kids have about life! This was my first year at camp and I was inspired by all of the kids, especially Conway after reading his blog. Thank you for giving me his blog and I will continue to follow it. I pray God will be with your family during his surgery and Conway will have a miraculous recovery so he can come back to camp next year!!!; July 19, 2012 at 9:51 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.