Care4Conway: All Done

Wednesday, July 22, 2009

All Done

Connie kept telling them he was "all done" while they were trying to get everything set up. Well, now he actually is all done. He is getting a 12-lead EKG while we speak and once he wakes up from sedation, we'll get a little something to drink and be on our way home. He was cardioverted in only one attempt. The plan is to up his dose to 20mls of amiodarone.

We had the "where do we go from here" talk and basically there are several scenarios that might play out. If he has another breakthrough, the potential is there for catheter ablation attempt and even surgery. Dr. Bromberg is going to plan as if that will happen and he's going to start consulting with Dr. VanHare and Dr. Balzer at Children's and Dr.s Bove and Dick at U of M. I'm glad he's planning ahead and getting everyone to put their minds to work about it, but I sure don't like hearing that we might be looking at O.R. time again. The problem with ablation is it would be very difficult with his anatomy. While it is risky, etc. Dr. Bromberg said, "We can't keep doing this." (cardioversion) There's a lot more to what he said and he did a very good job of explaining the pros and cons of each potential outcome, but I don't feel up to recanting it all right now. The kind of good news is that Dr. VanHare has a pretty neat technique where he actually has the interventionist (Dr. Balzer) put a hole in one of the baffles to allow for better access. I'll post more about it all when/if the time comes.

Connie's now trying some teddy grahams and chocolate milk.

Thanks for your prayers.

3 comments:

miareese said...: Thank you for sharing this update. We are praying for a successful outcome. You are all in our prayers.It humbles me to witness your strength and courage..God Bless you and your family.; July 22, 2009 at 11:54 AM
H. James said...: Glad all went well. Did you get any answers about why the pacer doesn't seem to be working as it should? Hope Connie contniues to improve.; July 22, 2009 at 12:52 PM
Anonymous said...: Way to go Big Guy...glad to here all is fixed and on the 1st attempt. We new you could do it!!!

Love, Uncle Gil and Aunt Maureen; July 22, 2009 at 8:04 PM

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.