Care4Conway: It's been a few days. . .

Sunday, August 9, 2009

It's been a few days. . .

. . .so I thought I'd update to tell you all nothing much has changed! We are liking the rather mundane, dull, boring, etc. last several days. Connie hasn't thrown us any curveballs and it has been nice! We've been spending lots of time with family and friends and his cousins from TX even made a special trip up here to see him. He's been eating more (actually asking to eat!) and has generally been acting like he's feeling better. He even climbed the stairs a few times and is carrying his laptop around again! He has a couple of "regular kid" things coming up on the calendar including library story time and a couple of "not-so-regular kid" things coming up like more labwork and a pacemaker phone transmission. He's getting his labwork done tomorrow to check his INR and next Monday, we are going to check the pacemaker and if it shows no history of high rates or atrial flutter, then he'll come off the Coumadin on 8/17, a week before his cath. I thought I'd share a cute thing he did tonight. He and Mookie were sitting at the table having a bedtime snack and watching Wall-E while Greg and I were in the living room. When it got to the part where the rocket was landing and there was an explosion, he yelled out, "Oh noooooooo" so emphatically it was ridiculous! It was such appropriate timing and so hilarious! Greg and I just started laughing and praising him. We didn't even think he was paying attention to the movie at all and then out of the blue comes this comment!

2 comments:

Annie Whitelaw said...: I am glad to hear that things have calmed down a bit and that Conway is doing well. The story about Wall-E made me smile because my little 07' march monkey loves that movie!; August 10, 2009 at 3:12 AM
Donna Beckemeier said...: Thank God for "normal" days.; August 10, 2009 at 8:13 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.