Care4Conway: 2 Year Check-up

Tuesday, March 24, 2009

2 Year Check-up

Conway went to Dr. Davis for his two year check-up today. I waited a few weeks after his birthday so I could take him during my spring break. He weighed in at 26 lbs. 4 oz. which puts him barely at the 25th percentile. Looks like we'll be keeping the whole milk for another year and trying to add in some good calories where ever we can. He loves "nog nog" (carnation instant breakfast chocolate flavor) added to his milk so that's one snack we'll be trying to make sure he has everyday. He's 34.5 inches tall which is in the 60th percentile for height. I'm not too worried considering Mary Kathleen had almost the exact same stats at her two year check-up. She was 34.5 inches and 25.4 lbs. Of course, she's a girl, but still. Now she's in the 75th percentile for height and weight!

Dr. Davis said that since he isn't putting two words together yet (like saying "dog bark") that we might want to consider increasing his speech therapy. He is happy to see that his receptive language is on target though. He passed all the little screenings for autism and lead poisoning. He had his lead levels checked several weeks ago when his dig levels were checked for Dr. Bromberg so we already knew that wasn't a concern.

I asked Dr. Davis about his opinion on Connie getting an April dose of Synagis, the vaccine for RSV that preemies and heart kids get from Nov-March for the first two years of life. He said that since Connie will be starting "preschool" next week that it would be a good idea to get one more dose in since the RSV season is running late this year. That means that most of the cases they've seen have been recently and the season isn't "over" yet. We put a call in to Dr. Bromberg and his nurse, Kelly, agreed that with being around other kids it would be a good idea. So now they will try to coordinate benefits with insurance and insurance will probably deny and then we'll probably have to fight and write letters! Nothing is easy. It is all about money and the insurance company doesn't want to spend another $3300 for another month's injection.

Stay tuned next week for an update after Connie's first day of preschool. He'll be going to Ft. Zumwalt North's Child Care Lab three mornings a week for 2.5 hours per morning. Monday is an Open House where Daddy will stay with him the whole time and he'll get comfortable with his classroom and the new people. Then Tues, Weds and Thurs he'll go to "school". This program lasts until the middle of May. It should be a good experience for him to be around other kids his age. I'm hoping his speech development will really take off, but I'm crossing my fingers that all the winter germs are gone by then!

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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.