Care4Conway: Happy Heart Day

Wednesday, February 16, 2011

Happy Heart Day

We just finished out Congenital Heart Defect Awareness Week, Feb. 7-14. We celebrated by making cookie/treat platters with the other Heart 2 Heart parents and kids for the pediatric cardiology offices at Mercy Children's, Cardinal Glennon and St. Louis Children's Hospitals. I was also able to deliver the donations from the very generous moms in my Assumption MOPS group for families at SLCH in the Cardiac Intensive Care Unit.

Since Connie's about as bowling-obsessed as they come, Greg made him some bowling valentine cards to give to his classmates at his party yesterday. Here's a pic of it.

Connie's still doing very well at school. He rides the bus one day a week now and loves it. We had his IEP meeting about a week ago and he has done great with his goals. He will still receive a little PT to work mainly on core strength and speech/language will see him a little more to add some receptive language goals too.

He'll be four years old in just a couple of weeks. It's so hard to believe! I know everyone says that, but there have been times that we weren't certain we'd ever see this day. What a blessing he has been to our lives!

1 comment:

Anonymous said...: I am so glad you are still sending these updates, Erin. This card is precious! It is so good to know how Connie is proceeding every day, and when he needs extra prayers, etc. (and when you do as well.) I hope all the rest of your family are keeping well. Love and prayers to you always. Sister Josephine; February 17, 2011 at 6:49 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.