Care4Conway: End of Year Update

Friday, December 30, 2011

End of Year Update

With 2011 coming to a close I thought I'd take a moment to fill you in on our dear Connie and the rest of the family. He's healthy as of this moment (actually the healthiest in the family---half the others have strep!) and has been having a pretty good run. He was just prescribed glasses again... he had them for a brief time when he was very young. He looks just dashing in them. He knows he can take them off at night and if he's napping so he asks for a nap constantly now to try to get some time sans specs. Of course he's not really falling asleep for the most part, little devil.

He had a fabulous Christmas and absolutely LOVES his automatic bowling lane and table tennis set.

He saw his oral surgeon again today and the date was set for the extraction of that supernumerary tooth. It's going to come out on March 6, 2012. We'll go back to see him again in late Feb. for a physical and to meet with the anesthesia team, but it should be pretty straightforward. Please pray that he will be in top health when the time rolls around for this procedure and that all goes smoothly.

Mary Kathleen has been having daily migraines and stomach issues which we think are related to some anxiety-type issues. She's quite the little worrier and is easily overwhelmed. Please say some prayers for her as she prepares to transition to a new school in January. It is one where we hope she will be able to find her voice.

Karsten is a joy, as usual. He still dislikes most people that are not in his immediate family and grandparents. God help the little old ladies that smile at him in the check-out line. He scowls at them until they look away! He's been singing his ABC's and other nursery rhymes and LOVES to throw his food down to the dog.

Cece is starting her final semester in elementary school. She's a great student, as evidenced by her latest report card. She volunteers to serve at mass and is still involved in the girl scouts.

Greg's business is undergoing some big changes and we are both filled with some anxiety over the future. Please keep him in your prayers at this time, that he would continue to seek the will of the Lord in his decisions, and that he be able to turn over any fears whenever they present themselves.

I promise I'll get some pictures up soon! Thanks for thinking of us!

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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.