Care4Conway: Blessing in Disguise

Friday, July 12, 2013

Blessing in Disguise

This post refers to the pacemaker lead issue. I'll try to keep it very simple. While I have a rather firm grasp on most things heart related, this is one area where I still feel very inadequate and out of my league. Electrophysiologists must be about the smartest people on earth.

We suspected Connie had a damaged atrial lead following his July 1st pacemaker
transmission. This past weekend we were at a birthday party and before anyone saw the warning sign, Connie had touched a plasma tube. They can cause electrical interference and make it so implanted devices get reset to factory settings or fail to work properly. Conway instantly received a shock down his arm (likely from his metal medic alert bracelet). He cried and was pretty shaken up for a few minutes. We notified his doctor who told us to check his heart rate and go ahead and send another transmission. He let me know Connie was okay, but the pacer was still acting up and he was going to have a Medtronic field rep take a look. They decided that there was an issue with his settings and so yesterday we went in and had it reprogrammed. Basically Connie has been rebooted and our doctor feels confident that the trouble he was seeing was indeed this sensing issue and not a fractured lead!!! He said to go on our way and we'll recheck it in three months. We are thrilled that it seems the threat of possible O.R. time in the forseeable future is now gone! Our brilliant doctor may not have been able to make this discovery without this unfortunate incident so we feel this has been a silver lining of sorts and a blessing in disguise.

As always, thanks for keeping up with us and keeping little man in your prayers. We have an AWESOME God who is always by our side.

2 comments:

H. James said...: Sorry he got that zap, but that was overall a great update! Glad everything is rebooted and working well!!; July 13, 2013 at 8:17 PM
Anonymous said...: I agree, Erin, God is indeed awesome and looking after our brave young man. Thanks to Him this was discovered and taken care of. My prayers for you all continue. My laser treatment is on the 24th at 1 pm at Stanford. I will count on your prayers then. Love, Sr Josephiine; July 14, 2013 at 11:58 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.