Care4Conway: 5/10/09

Monday, May 11, 2009

Cardiology Follow-Up

Some pics from Saturday. We had a picnic at the park--Yes, he can climb the blue ladder all by himself!

Today was a busy heart day! Connie went right after breakfast to have labs drawn to check his INR levels so that we would get the results in time for his appointment with Dr. Bromberg this afternoon. He was brave. I fear that next week when it is time to get them drawn again, he will not go in so willingly. He's such a smart boy I'm sure he'll recognize the place. He ate even better today than he did this weekend. He had a whole hot dog for lunch and ate a full serving of peaches. On the way to the doctor he had some peanut butter crackers and a whole sippee cup of milk/half and half! Colleen and Kelly and everyone in the office was so happy to see him looking better! Kelly and Colleen were especially impressed with him when he showed off his jumping and his iPod Touch skills. Colleen listened to him, asked lots of questions about his sleeping and eating, took BP and did an EKG. He was a little concerned about the BP check but we assured him that there would be no "owies". He even helped put the stickers on for his 12-lead EKG. He still has adhesive on his skin from all the stickers in the hospital. Oh well, what's a little more?!
Dr. Bromberg came in and commented that Connie looked a lot better than the last time he saw him. Connie showed him the "Melmo" movie he was watching on the iPod and Dr. Bromberg listened to him. He said his liver is still enlarged but was happy to hear that he's not napping more than what's normal for him. He said he wants to see us back in 10 days to look at him again and make some adjustment to the pacemaker. For now he wants to leave it alone. The best news is that he will likely take Connie off the coumadin in 2-3 weeks! He doesn't think he wants him on it the full three months that Children's had said so that sounds a lot better to us! It means less pokes, less bruises, less medicine. We're also going to alternate the doses some, taking 1mg three days a week and 2mg 4 days per week.

We're going to check him with a stethoscope a couple of times a day while he's awake and if his heart rate is fixed right at 100 bpm while he's awake, that is a sign to us that he's stuck in Atrial Flutter again and the pacer is pacing him at 100. So that's what we'll do. Please pray that this does not recur any time soon.

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.