Care4Conway: Another Reprieve

Friday, November 5, 2010

Another Reprieve

After two visits with Dr. Noble, an oral surgeon at St. John's, it's been decided that Conway will have his extra tooth removed at some point next summer. The doctors all put their heads together and would like to wait so that he's a little bigger which will make the anesthesia people a little less nervous and hopefully also give the tooth some time to move down in a little better position. He's fairly certain that the front baby teeth will have to be sacrificed in order to extract this one so that means Connie will be toothless in front for a few years :( Like my mom said though, at least he'll be here!

On a medical front Connie's doing so well. He's went to a kickaroos soccer day last month and has been jumping in bouncy houses at fall festivals and acting like a regular three year old for the most part. He's been to see the ped a few times lately with viruses (he gets EVERYTHING!) but has been handling them better than even this past summer when he got sick all of July. At school his teacher reports that he's now doing all the climbers-even the rock wall-to access the play equipment which is a big milestone for him (and a goal on his IEP).
Here he is climbing the big ladder up to the top of a tall inflatable slide--NEW SKILL!

For Halloween he was, you guessed it, a bowling pin. His Grandma Marybelle made his costume and it was perfect for him. He got so many compliments and a ton of laughs when he asked people, "Why didn't the skeleton cross the road?... Because he didn't have any guts." He's talking and singing constantly now. We are trying to be supportive, but I have to admit there are times I wonder why it was I prayed so hard for him to learn to talk, haha!! Five minutes peace, ya know?
Here he is with Wonder Red (Reading super hero with "word power" from the PBS show Super Why!, aka Mary Kathleen)

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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.