Care4Conway: Good News Again

Monday, May 12, 2008

Good News Again

We just got back from the cardiologist for his one month follow up after his cath. The word normal was used over and over to describe him! His heart function is normal. His "severe" aortic insufficiency (the leaky tricuspid valve that was going to need to be replaced) is now classified as mild to moderate and the doctor doesn't think it will need to be replaced anymore if the leak stays like this. He said that it's unbelievable how far he's come and that he's like a normal toddler now. His pressures on the right side are a little high still, but not something that requires surgery. If the branch narrowing worsens, they can fix it in the cath lab. So, we're looking at a pacemaker change in the next five years (we'll evaluate on a yearly basis when we'll need to replace it) which is an outpatient procedure and replacing the conduit that is going from his right ventricle to the pulmonary artery sometime in the next 5-10 years. He said that compared to what he's already been through, that surgery is not that big of a deal. We are beside ourselves with relief and gratitude. We can't stop thinking about what the Holy Spirit said to us at Easter Mass about it being time for him to be healed. In God's timing, he's being healed. We go back to the cardiologist for pacemaker check, echo, x-ray, etc. in October. Yay! We get all summer off.

Thank you, Lord for gracing Connie with your healing presence. You are all powerful, all knowing. You had a plan for him long before we even knew about him. We can't understand your plan, but we trust that your plan is in our best interest. We know that all good things come from you and we must praise you for the good and wonderful healing that you are bestowing on little Connie's body. Please continue to help him make gains in feeding and cardiac function. Please strengthen his ankles so that he stands properly and can learn to walk. Please also help us while we go through this transition time as he struggles with sleeping. In Jesus' name we pray, Amen.

1 comment:

H. James said...: Hooray for the good news! What a great way to start my day today. Thanks for the update.
-Heather; May 13, 2008 at 7:25 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.