Care4Conway: Better than Expected

Monday, March 15, 2010

Better than Expected

was the title of the email I just got from the cardiologist. If you weren't confused enough after reading the previous post with the appt. update, this will for sure confuse you! Basically, the doctor looked again at all of Connie's echo angles from the last two echos side by side and does note an incredible improvement in the last two months. He is attributing this to the adjustment made to the pacemaker and said that in 2-3 years Connie's heart rate will naturally decrease as a function of age and at that time we can resume dual chambered pacing. For now, the benefits that one reaps from dual chambered pacing do not outweigh the improved LV function we are seeing by pacing him disconcordantly.
Here are the specifics:
Biplane ejection fraction* (January 44% vs. March 60%)
A4C single plane ejection fraction (January 55% vs. March 70%)
A2C single plane ejection fraction (January 34% vs. March 47%)

*composite of A4C and A2C, and considered best measure of overall function.

All we have to say is WOO HOO! We are so blessed to have such a diligent, thorough doctor. We are still proceeding with the new drug-Aldactazide-rather than stopping a diuretic completely, but we'll reassess this in two more months. Praise God!

3 comments:

Anonymous said...: Yeah! Always great to hear things are better than expected. Connie is always in my prayers. ~Angie Montgomery; March 16, 2010 at 2:36 PM
IL Whitelaw's said...: I am so happy to see that things are going great with Conway. How exciting for him to be so healthy and having such a great time in school!; March 18, 2010 at 8:53 AM
Anonymous said...: This is wonderful news! I am so grateful to the Lord. Now you take care of yourself, too, Erin, and know we are praying for you and the whole family, present, and on the way. Love and prayers, Sister Josephine; March 18, 2010 at 10:14 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.