Care4Conway: 9/13/09

Sunday, September 13, 2009

Things are Getting Better

Some of you may know that since the first hospitalization of the year in May, Connie has, in a lot of respects, gone from an independent toddler to a whiny, needy, clingy baby. Of course, the trauma of heart failure and being in and out of the hospital played a large part in that, I'm sure. But now that we have been told that his heart is looking better than ever we'd like him to get back to himself so he can grow and develop. This week he has made huge strides in the eating department. He hardly ever asks for "help" anymore when eating and is feeding himself like a champ. He has kind of figured out that if he wants it in his mouth, he's got to be the one to put it there! He's also eating more at one meal instead of snacking on little portions all day long. Again, a lot of that was probably due to his heart and the lack of blood flow to his digestive tract, but it was getting crazy there right before surgery. Then, yesterday we had probably the best new development. He fell asleep on his own for both his nap and for bedtime! I was so excited for me and so proud of him at the same time! At naptime, he was overly silly and wouldn't settle down so I told him I was not going to lay with him if he was just going to play. I got up and left and surprisingly, he did not cry! He didn't go right to sleep, but after he did fall asleep, I noticed he had found some books to look at from the night stand so I guess that's what kept him busy for a bit. Then at bedtime, I told him how proud I was of him for taking his nap like a big boy and after reading stories and praying, I told him I'd leave the bathroom light on for him and I was going to be right out in the family room doing laundry, etc. He said, "Tay" (okay) and let me kiss him and tuck him in. It didn't take him long at all to fall asleep! I hope this continues because it's so nice to have some time in the evenings again! I got so much done and didn't have to wake up to a mess and a handful of unfinished chores. Please pray that this trend toward some healthy independece continues and our "big boy" keeps on feeling better and better.

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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.