Care4Conway: First Day

Thursday, August 23, 2012

First Day

Connie started his first day of kindergarten (Primary) today at the Academy of the Sacred Heart. On time. With his class! We are flabbergasted that just 15 days ago his little heart was stopped while surgeons worked to make it better. Now he's reached this "normal" childhood milestone on pace with his peers. Today and tomorrow are half days. When I dropped him off in the cafeteria this morning he was a little nervous and seemed on the verge of tears. What happened next couldn't have gone any better. His school nurse walked in and introduced herself and asked him to help her with a special job. That's when I said good-bye and left him in her capable hands. She walked him over to the 8th grade boys who would be in charge of delivering him to his classroom on the other side of campus. She asked him if he would carry something to his teacher for her. He willingly obliged. That little bit of responsibility was enough to take his mind off his nerves and he immediately started jabbering to the big boys. He told them all about Star Wars on the XBox and how he slept in his sister's bottom bunk last night, etc. There are definite advantages to working in your child's school! It was so wonderful to get a full report on the start of his day. When I picked him up and asked him how was his day, he replied, "It was a little bit great!" He was all smiles and can't wait to go back tomorrow. His teacher reported, with a twinkle in her eye, that he had a great first day. To quote his cardiologist, "...and his remarkable story continues." Today marks the beginning of a new journey for Conway's heart. His physical heart has been restored and now is the time for his spiritual heart to grow and be nurtured. We are so blessed that his school is a place where the focus is on training the heart as well as the mind. Here are a few pics from the first day.

3 comments:

Anonymous said...: ...and my favorite part of this post? The use of the word "flabbergasted." I'm gonna start using it daily. and man these Captcha's are hard!

Greg Beckemeier; August 23, 2012 at 1:08 PM
Anonymous said...: OMG! Can not believe it was only a few days ago that he had his surgery! They both look adorable!
I will always remember Connie and keep him in my thoughts!

Toodles, Nurse Caren; August 23, 2012 at 1:22 PM
Laura Ahern said...: These pictures are priceless of them both! They look professional because they are both so photogenic and adorable! I'm so happy to hear that he had a wonderful first day, and here's to many more firsts at school!!

Laura Ahern; August 26, 2012 at 3:19 PM

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.