Care4Conway: Get On Your Knees People

Saturday, May 2, 2009

Get On Your Knees People

Dr. Goel just reviewed the cath and gave us the news we don't want to hear. He is in moderate to severe heart failure. His liver is being affected. He is to the point that he can not leave the hospital and will require IV heart failure medications, lasix and milrinone. Dr. Goel wanted to talk to Dr. Bromberg (our actual card) to decide if he wanted him transfered to the CICU at Children's or just stay here until Monday. He is getting set up for a cardiac cath on Monday at Children's to get a better look. His LV is quite dilated and the conduit is very calcified (has become bone). Significant narrowing and needs replacement. So we're waiting to hear after Monday what the timeline is for another open heart surgery. Then, while Dr. Goel is on the phone with Dr. Bromberg, he remembers me asking about Atrial Fib going undetected because of the pacemaker. He says he's not concerned about Fib, but the two docs think he may be in Atrial Flutter and if he's been in it for several days, it could explain the sudden failure and severe mitral valve problems. Dr. Bromberg is on his way in to interrogate the pacemaker since he's an electrophysiologist and he'll know if it's A flutter. If so, they'll try converting him (might be with the shock paddles) and once he's converted, his symptoms could signinficantly improve and rather quickly. That sounds to me like we could avoid surgery if it's just A flutter! Please pray. We'll update when we know more.

2 comments:

Faith M. said...: We are praying for sweet Conway. I was so shocked to hear about him at the heart walk today. I am praying that this will be something they can get under control and that the treatments will be effective. I am so sorry that you are going through this. Stay strong ,sweet boy!

Lots of love and prayers,
Faith Mahoney (Maggie Jane 2 yrs. HRHS); May 2, 2009 at 12:24 PM
Unknown said...: Erin and Family,
I am sorry to hear Conway is having such a hard time. I will put Conway and your family in our prayers and on our prayer list at our church. God is good and He will take care of Conway. God Bless,
Gina Dahlfors; May 2, 2009 at 3:32 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.