Care4Conway: Connie Update

Saturday, June 26, 2010

Connie Update

It's been a few weeks so I thought I'd update everyone on the world according to Connie...
Since he's three now he was able to attend Vacation Bible School at our church for the first time. He calls it "Buhcation Bauble School". It's so cute when he says it. He separated very well from us and we got reports each day that he did great. We were a little disappointed to discover that he got pooped out pretty easily there. The first day he complained a lot at school about having a headache and his teachers were concerned. He had a couple of symptoms of maybe a little something weird going on with his heart so we put in a call. Dr. Bromberg was out of town but when he came back in he was great about having us come in to give him a quick once-over just to make sure everything was fine before we left for our trip to Texas. Nothing has changed with Connie's heart, but he explained that this heat we've been experiencing is hard on everyone, and especially Connie. We held off on giving his diuretic to him until after VBS the other days and that seemed to help some. That way he was plenty hydrated while he was there. Unfortunately for him we are vacationing somewhere even hotter than home! He's spent most of the time either in the a/c or in the pool! My brother has a playground and park right behind his house but Connie hasn't had a chance to visit it yet because of the heat. Hopefully we can get him out one evening if it cools off some.

At home, Connie has been swimming in our little 3 ft deep backyard pool and cautiously enjoying himself. He usually says he doesn't want to swim but we put him in anyway and he ends up having a blast.

Hope everyone is enjoying their summer. This summer is such a change from last summer when everything hinged on his health. Don't get me wrong. It's still on the forefront of our minds and does affect our plans and things, but it's not a critical level of concern like it was last year at this time. He had just been discharged from the second week-long stay due to arrhythmias and had been started on a pretty significant regimen of heart meds. We are so thankful that life has resumed to a much more normal level and we have more normal concerns like where to go on vacation! Thank you, Lord!

1 comment:

H. James said...: Overall, that sounds like a great update and if you can find a way to beat the heat, you're in for a great summer!!; June 27, 2010 at 7:08 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.