Care4Conway: 6/29/08

Thursday, July 3, 2008

Speech

Connie's First Steps Service Coordinator came out today to rewrite (update) his plan. He'll be receiving speech services one time per month just to stay on top of his progress. He still is saying no words although a few times it has sounded like a real word. He doesn't mimic words. When we ask him to repeat us, he just grins and laughs at us. Hopefully by the end of the month we'll meet our new Speech Pathologist.

On the glasses front, we're going to look for frames on Saturday morning. I think it's going to be tough because most places don't have much selection or even carry infant/toddler sized frames. If they do, they don't accept his insurance! So, if any of you readers know of places that carry a large selection of small child frames you might save us some time by passing on that info!

Happy Fourth! God Bless America. Just think how blessed we are that Connie was born in the USA and was privileged enough to be able to receive the best medical care in the world to correct his defects.

Monday, June 30, 2008

Cowboy Connie

We don't have too many pics b/c my camera batteries died right after we got there, but we went out to the farm yesterday to visit with Connie's Great Uncles Doyle and Carl, Great Aunt Sylvia and several second and third cousins. He bounced on Holly's trampoline, let a real cowboy (cousin Chad) hold him and played on Cutter's rocking horsey before dinner. After dinner he was too pooped to go "hunt" jack rabbits in the pasture or ride on the four wheeler with Mommy and Uncle Tim. Here are a few shots of Connie and Cutter in Cutter's newly decorated cowboy themed room and one of Chad holding him when we arrived and one of Grandpa holding Connie and Cutter at Addison's baptism.

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.