Care4Conway: Looking Back

Sunday, October 5, 2008

Looking Back

This time last year we were scrambling to get home from Michigan. Connie and I were in Detroit's airport and perfect strangers were helping me to usE the gravity bags to tube feed him. Security personnel were so kind as they patted him down since he couldn't go through the metal detectors with his new pacemaker. Flight attendants and fellow passengers listened to his story and promised to pray for him.

It's hard to believe it. It feels like sooooo long ago and yet, the memories are so vivid. Pumping in the bathroom at the airport while I tried to keep his car seat moving and giving him stimulation at all times, him throwing up five minutes before we were to board and needing a complete change.

We're so grateful to everyone who has come along on this journey with us. Your prayers and support have been so needed and answered. May God bless you all. Our boy is doing phenomenally well. This has been such an uncertain year and while nothing is absolutely certain, we feel such a sense of peace about Connie's health and life and we have seen the hand of God so vividly in his story.

October 5, 2007 was the real beginning to a long road to recovery for Connie. May October 5, 2008 mark for him the beginning of "just being a kid" for him. The hard work and therapies are just about complete and hopefully it will be a time for just living and enjoying life!!

We go tomorrow for flu shots, a follow up with the pediatrician for their colds and our big trip to the cardiologist for all the testing to see what's really going on in terms of his heart. Please pray that we get good news tomorrow and no discussion of "severe" or "surgery" or "failure" comes up. No matter how great a child looks, I don't think heart parents ever really know what will be said and that fear is always there that we'll be told it's time for some sort of intervention. We have to keep letting it go and putting it in God's hands. We know His plan is best.

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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.