Care4Conway: Big Appointment Update

Monday, March 15, 2010

Big Appointment Update

Today was Conway's 2 month follow up at the cardiologist's office. At the last appointment, we changed the pacemaker settings so that he wasn't beating so fast and this was the appointment where we would see if that improved his ventricular function or not. He remains asymptomatic and seems to keep up just fine with the other kids in his preschool class according to his teachers. His appetite is good and now that he's not sick anymore he's put on a couple of pounds in just two weeks! We've even been given the okay to switch him to 2% milk from Vit. D. His echo is pretty much unchanged and his squeeze actually looks pretty good in all but one plane or view. Upon exam he actually sounds the same and his liver is a tad smaller (a good thing, enlarged liver is a sign of heart failure). He definitely doesn't present as patient with a poor squeeze or cardiomyopathy. What is still concerning is that his ProBNP, a blood test that measures heart failure, is still very elevated. His levels that were drawn last Wednesday were close to 3000 and normal is considered 150. Again, this test has not been studied much in the pediatric population and we don't know if the higher the number means a more severe level of failure. All we do know is that when he was very heart sick he was 7000, when he was "all better" eight weeks after mitral valve repair he was 1900 and now he's 3000. That says he's worse than the fall, but not as bad as last spring. Given that information, Dr. Bromberg wants to proceed cautiously and treat him as if he were a patient with dilated cardiomyopathy. I thought we'd be devastated hearing that news today and even asked Greg to come to the appointment with me thinking that my pregnant, hormonal self might lose it. However, we left feeling somewhat relieved. He's NOT getting worse, he acts fine, we're just taking precautions. Dr. Bromberg says he wants this heart to last Conway another 80 years and he's unsure what exactly could be making that one view look off. It could be an injury from his first surgery and it's just going to stay at that level of decreased function forever, it could be that the aortic valve is a bit leakier or it could be this degenerative dilated cardiomyopathy business. Our biggest concern is with preserving the function he has now and not letting this get worse. It may not ever get worse on it's own, but we don't want to find out. For now we are starting him on Aldactazide and we go back in two months for another follow-up. At that time he will likely start Carvedilol (Coreg). We are coming off of the thyroid drug since his TSH was normal. At one time it looked as though he may be free of any heart drugs and that's not looking so likely now. The important thing is that the word transplant "isn't even in the discussion" according to Dr. Bromberg. Acting on this now is hopefully what will prevent that becoming necessary in the next 20-30 years.

1 comment:

Unknown said...: Definitly a good update overall. I am happy that they are going to monitor him so closely. That is so important. And way to go on the weight gain. I'm so happy preschool is going so well.

Heart Hugs to all,

Nicole Hoagland mom of Lorelei HLHS; March 15, 2010 at 9:38 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.