Care4Conway: Six Month Reprieve

Monday, September 27, 2010

Six Month Reprieve

Connie saw Dr. Bromberg today. He was very impressed to hear all about how wonderfully Connie's doing at school and his overall approach to life. He says that when kids are doing well heart-wise you will see them make this kind of progress and it helps to reassure you that they are doing well on the inside too. His blood pressure was normal, good heart rate and left ventricle function looked great. On the echo, his gradient was a little worse than on previous films. His heart has grown (and so has he! He's now 34.7 lbs and 39 inches) and obviously the conduit has not. It will need to be replaced at some point and we knew this. We were hoping it would be in about 5 more years or so but he estimates it will be more like within 1-3 more. We were really praying that he could hold out with this one until he was big enough to handle and adult-sized one and that may mean it would be the last open heart surgery he'd ever need. Dr. Bromberg says that still might happen and would definitely be optimal. We go back in six more months to look things over again and see if there's any difference. Right now he's asymptomatic and so there's no rush. He feels Dr. Bove would say with the LV function looking as good as it is and him not showing any exercise intolerance at this point, that we should just sit tight. So, that's what we do! Now we have this behind us and can enjoy the fall, the holidays and just being a little more normal. Thank you, Lord for hearing our prayers and continuing to bless our boy with good heart health. We are trying our hardest to make sure he knows you and knows that your love for him is more than our love for him could ever be. Amen.

3 comments:

Gil Beckemeier said...: Wonderful news!

Jesus loves me, this I know

For the Bible tells me so

Little ones to him belong

They are weak but he is strong

With Love, Grandpa Gil; September 28, 2010 at 6:18 AM
Emmett Joseph said...: I am happy to hear that he is doing so well--what a blessing!; September 28, 2010 at 7:57 AM
Anonymous said...: So happy to hear the appointment went well. They are always so stressful! God bless! ~Angie Montgomery; September 30, 2010 at 7:28 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.