Care4Conway: General Update

Monday, July 29, 2013

General Update

No earth shattering news in this update. It is more of a post for our own records but you are welcome to read and stay in the loop.

Connie has been generally well this summer but I have had a nagging feeling he's a bit off for about the past month. He is sleeping more, eating less, whining more, playing less... just not himself. We have seen this in the past when his heart is out of rhythm so we called the cardiologist to see if he'd take a look. I know when Greg notices a difference it isn't just my imagination. We went in last Thursday for a pacer interrogation, chest x-ray and exam. His heart checked out perfectly. Dr. Bromberg understood our concerns and patiently explained that Connie is very stable right now, as hard as it is to believe, and we should expect him to remain that way. Seems tough when you are so connected to the rest of the "heart world" via social media and there are a lot of kiddos struggling right now. He urged us to see the pediatrician for some lab work and another exam to test for a possible viral infection of some sort. He ended up getting a very bad reaction (again) to a mosquito bite Thursday afternoon so the doctor wanted to take a look at him anyway. His left foot and leg swelled so big he couldn't put a shoe on or walk at all on Friday. That little bite earned him 10 days of antibiotics and 5 days of steroids. We got the lab results yesterday and they were all normal. They even checked a BNP at Dr. Bromberg's request and it was the lowest it has ever been recorded in him (18.6)! BNP is the test that measures heart failure. When he needed his mitral valve repaired it was over 7000 and after his last surgery, I believe the lowest it got was around 200-400. So this definitely seems to be a big improvement. His heart size on x-ray was also improved compared to the April 2012 film. It is now considered normal size. I will be posting about Camp Rhythm very soon as it begins this Wednesday. He is looking forward to it. We are moving on Thursday so there hasn't been much time this summer to post pics lately. We have a few cute ones from recent boat rides on the Mississippi and Illinois Rivers. He loves swimming and tubing, but I think his favorite activity out there is napping in the cabin as the boat sways.

**Updated 7/30/13: Dr. Bromberg emailed after getting the lab results from Dr. Davis and says he wants Connie to wear a holter monitor and get out a play quite a bit with the monitor on. When he was interrogating the device in his office last week, he noticed that the unit was picking up "artifact" any time Connie would stretch or move his arms. It could be that when he is running or very active that the pacemaker is sensing extra beats and getting out of synchrony. Generally they would test this in the office using a treadmill but Connie is too small for theirs so we will wear a holter and take him to the driving range, outside to ride scooters, to the park and anything else we can find for him to enjoy that is active. So, we will do this test next week sometime and share the results when we get them. This should not be a big deal, just some tweaking might be necessary. He will still be able to have both ventricles paced, but may go back to the old mode he was in prior to the generator replacement last August.

No comments:

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.