Care4Conway: Congrats to Mommy and Sissy!

Monday, May 18, 2009

Congrats to Mommy and Sissy!

Connie helped celebrate Mommy's M.Ed. in Educational Administration along with big sister, Cece's First Communion on Sunday afternoon. It was a big, happy day for our family. Here are some pics. The first one was from Cece's school picnic on Saturday.

Coumadin Update: Connie went for his blood draw this morning and Greg had all kinds of issues getting it done. He was there over an hour. This despite the fact that last week I went through all the hoops of getting him set up as a "series patient" in hopes of avoiding trouble like this! To top it off, when I called Dr. Bromberg's office to get the results and find out what dose he wants him on based on those results, they said that their lab doesn't have the blood yet even and it won't be picked up from O'Fallon until 9pm tonight!! I was told last week that the Dr. would have the results by early afternoon as long as we got the draw before 10:15 when the first courier comes. To make a long story short, it's apparently a CIGNA issue. Have I mentioned lately how much I LOVE (sarcastic tone noted) that insurance company?! Bottom line: No results = No clue what dose he needs.

4 comments:

Jenn said...: CONGRATS on your masters!!! and of course on first communion, too! you're amazing me how much you can do!!!; May 18, 2009 at 10:37 PM
Anonymous said...: WOW! We love the pics. Congrats to you all.
From Mrs. Raymond's class (AKA Celeste's class); May 19, 2009 at 8:42 AM
Anonymous said...: I've been following your family's live's since we ordered Greg's company boxes. (we love them by the way!)
So glad Conway is growing and is so happy!; May 19, 2009 at 4:03 PM
Staci Budde said...: CONGRATULATIONS!!!!!!!!! Hope everyone is doing well!! Call me sometime 314-277-9018!! We can get together!; May 19, 2009 at 11:19 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.