Care4Conway: Last Day of Preschool and Soccer News

Thursday, June 2, 2011

Last Day of Preschool and Soccer News

Conway attended his last day of preschool for this school year. He and his classmates celebrated by wearing tie-dyed shirts that read, "508 Rocks." He was a pretty sad when he got to school. Not because he was being sentimental, but because he didn't want to change into that shirt. He had worn his beloved bowling shirt today and was not happy about taking it off. I convinced him to leave it on long enough for them to take a class picture and by that time he forgot and wore it the whole morning! He also got to jump in a bouncy house and have a beach themed party time in the classroom. He had a great year. Looking at his portfolio reminds me of just how much he's grown these last 9+ months.

Now that he's off school, he can focus on fun things that he didn't have much time to do during the school year such as visiting the library and aggravating his sister. Story times for his age group fell on mornings when he had preschool so it'll be nice to get back to the library for some activities this summer. And now that he and MK are going to be with each other all day, every day, I'm sure he'll find new and interesting ways to bug her! It's already starting, unfortunately!

The coolest (well, technically probably the hottest as in warmest) new thing he's going to be introduced to this summer is SOCCER! That's right. Our boy is all signed up to play soccer. It's a very recreational league of 4 year old's and it's coached by a friend's dad. This makes me feel better because he'll let Connie sit and rest as much as he wants. Or dig in the dirt, or pretty much whatever the kid is up for. Dr. Bromberg even went so far as to say he thinks it would be a great experience for him to be with his friends and maybe even make some new ones! I am ashamed to admit it, but I have struggled for awhile now with feeling like Connie will never fit in with the other boys if he doesn't play sports. I know it's ridiculous, but I can't help but see the friendships that other kids in catholic schools have because of their unity on the field, in church and in the classroom. That sense of community and togetherness is the main reason we chose Assumption for their school so I have just been worried that if he doesn't play soccer like the other boys going into kindergarten he'll be left out and never accepted or something. Having said all that, he may play one game and hate it. He may get too overheated, or just not be interested or we may deem it too rough for him and just be uncomfortable with the potential risks posed to his pacemaker and wires. And that's okay. It's totally okay. It's not like he's ever going to be an Olympian. In fact, we were told that in our very first conversation with Dr. Bromberg on March 5, 2007. He said that once he had his double switch, he would expect him to live life like any "normal" child, but would not reach the Olympics. He then reminded us how few healthy-hearted athletes attain that level in their sport. We'll for sure be taking some video at his games and post it here. I am not sure, but I think his first game in this summer league is in just about two weeks. I can't believe that two summers ago he was in pretty bad heart failure and now he's running around and dancing like crazy! I don't know why we've been so blessed, but I'm going to continue to give the glory to God and try to stay ever-grateful.

1 comment:

Anonymous said...: Wooohoooooo! Can't wait to see pics of him in his uniform!!!!!

Nurse Caren; June 3, 2011 at 8:51 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.