Care4Conway: Maybe a Glimmer?

Saturday, January 16, 2010

Maybe a Glimmer?

I gather many of you did not quite know what to think of the last post from Thursday regarding his check up. In a nutshell, here's how we took the news: DEVASTATED!
While nothing is imminent, it sounded to us like our best case scenario was that his function could improve with some simple changes to the pacemaker. Worse case scenario is that this is actually a life threatening disease-one for which there is no cure.

Well, one test we had done yesterday was that notorious BNP to measure heart failure. We were kind of expecting it to be elevated above what it was in October since his echo and physical exam are showing that his heart function is decreased. In October, 8 weeks after his surgery and when he was absolutely doing phenomenally heart-wise, his BNP was 1800 (normal is under 100). Guess what it was yesterday? 439! It has dropped significantly so it's quite puzzling to me that he could actually be getting worse. I haven't heard back from the doctor yet about what this may or may not mean, but for the moment we're taking it as the best news we've had all week! Hope is the new theme around here... for the day, anyway!

Side note: He's developed a nasty rash and it's been narrowed down to one of two possibilities. Either it's an allergy to penicillin or it's Mono. We get the lab results on Monday to determine if it's mono. He's stopped the antibiotics he was on for his ears and whatever bug he had and his ears looked great today.

2 comments:

Abi's Mom said...: Connie! Hang in there!

Abi is sending hugs and kisses!!

Joanna
www.care4abi.com; January 16, 2010 at 7:42 PM
Aaron and Erica said...: We're praying for you guys and the Dr.'s, that they will have wisdom in how to best treat Conway.

I always feel like I learn something from your posts...thank you for being so detailed (although I know that is not your sole purpose for blogging :)

Erica; January 16, 2010 at 9:34 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.