Care4Conway: Wow. . .

Tuesday, May 5, 2009

Wow. . .

I stepped out to go to the cafeteria while he napped and his nurse left for her break right afterward (someone covered for her, obviously). Apparently, while we were gone, the tech came in to do his ECG or EKG, I can't remember which, and he didn't even fuss! He's such a good boy. Dr. Bromberg will look at it tonight but he mainly wanted it to have a history so that the next time this happens we have something to compare it to. By the time I got back up to the room he was back asleep! Amazing child, he is. What this really means is that he's getting too used to being bothered. You know, desensitized! Like watching too much violence on tv or something, only it's having too many procedures in a hospital setting. Sad, really.

I have to say thank you to everyone who has been praying for Connie, calling, emailing, posting messages on his blog, or even just reading the updates. We've got old friends and new coming out of the woodwork offering whatever they can. . .ideas on getting him to eat from his old dietician and OT, babysitting for Mary Kathleen, letting out the dog, arranging subs for me at school, etc. I especially want to thank Lisa, a fellow heart mom, for coming up the past two days to chat and for the special goodies she brought Connie. She has a little boy six months younger than Connie with the same heart condition.

2 comments:

H. James said...: That all sounds good, yes? And you'll be going home soon?
I'm feeling cautiously optimistic with this update. I'll be tuned in for more, especially for Tuesday's cardioversion.; May 5, 2009 at 3:30 PM
L. Pappalardo said...: It is absolutely my pleasure!; May 6, 2009 at 11:04 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.