Care4Conway: 8/26/12

Monday, August 27, 2012

First Post-Op Follow Up

Conway saw Dr. Bromberg this afternoon. I'd like to think he's already grown, but maybe that's just because they didn't make him take off his shoes :) He started off with vitals and a pacemaker interrogation and then the doctor came in. Connie actually fell asleep during the time when the doctor was testing the pacemaker. We are going to send him to school for 1/2 days only the rest of this week at least. It is just a lot for him and very soon after surgery. He's not complaining, but we all think it would be wise to let him ease into full days a little more slowly until he's fully recovered. Next we went down to x-ray. Lungs were clear so we get to decrease the lasix to 1X/day for the next two weeks when we will hopefully be able to stop it altogether. Check out that new pacer!

Dr. Bromberg was happy to hear that his energy level seems back up to where it was pre-surgery. He believes it is a great sign that he's already at that point and we're still less than 3 weeks out. He said that improvement may even take 6-9 months before we see him look more like his classmates. We have to remember that because he's been "tired" for several months and not as active, he's not in tip top condition. It could take some time for him to get stronger and faster. I really am not worried if he never runs up a set of stairs. I am just happy as long as he is not going backwards in energy and stamina! The doctor also looked at his incision where the stitches are poking through in a couple of spots. He thinks it is best to leave them be for now, hoping they'll dissolve and fall off soon. We're just keeping an eye on the area around, that it doesn't get redder or drain. We go back October 1st for another follow-up, including an echo. Hopefully it's smooth sailing until then!

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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.