Care4Conway: Update on yesterday

Saturday, November 7, 2009

Update on yesterday

When I last posted, Connie was sleeping peacefully. Wouldn't you know we just reinstated the tough love thing at night about 5 days ago and had to ruin our progress? He woke up at 4:30am and I was afraid he might still be sick or feeling ill so I sat in his chair in his room thinking he'd fall right back to sleep and I'd sneak back to my bed. 1/2 hour later, he finally shut his eyes. As soon as I tucked myself in my bed, he was crying and already out of bed! I was so exhausted I just laid with him and he fell asleep about 1/2 hour later. So he was up for a total of an hour, but didn't vomit again. Today he's acted completely normal. Since it didn't even last 24 hours, I'm assuming it was just some weird reaction to the shot he got on Thursday afternoon. Thank you for thinking of him and praying extra hard that this didn't send us down that path, the one that all heart moms know we could be back on at any time.

Also, I have to share a big milestone. Mary Kathleen scored her first soccer goal today. She kicked the tying goal in what was the closest game the Assumption Pre-K girls have had to date. It was a genuine goal too, not just one the goalie happened to let through. Once she scored, she became a totally different little player. She must have gained a great deal of confidence with that shot because she took off and went after that ball with a new sense about her. It was so fun to watch. You'd have thought she won a gold medal or something the way we carried on. Of course, all the parents do that on our team since it is so rare that we actually score!

Tonight we've made s'mores outside and told stories and read books in the tent in the backyard. The plan is for the girls and Greg to stay the night out there while Connie and I remain in the comfort of our own beds. We shall see how long they all last!

1 comment:

Abi's Mom said...: All the best for you and precious Connie...; November 15, 2009 at 8:09 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.