Care4Conway: Six Years

Sunday, March 3, 2013

Six Years

Can you believe it? Our dear boy has reached yet another milestone! He turned six years old today. I thought it was funny that when I posted about it on facebook, his very first nurse who cared for him in the NICU at Mercy (St. John's at the time) commented on how she couldn't believe it had been six years already. Honestly, most days I feel like it has been at least twenty. No matter how hard I try I can't imagine what life was like before he was in it. Here he was just moments after birth, two days before our world as we knew it came crashing down and we were forced to grown in faith in a way we didn't even know we needed.

We spent this birthday weekend doing what he loves... bowling and Angry Birds! Friday night we got a hotel room and invited his cousin Liam to spend the night and swim all evening. The boys had a blast being boys.

Then on Saturday, we went bowling with cousins and invited family back to the house for cake and ice cream. Our silly boy didn't even touch his cake. He probably would have rather had fire hot cheetos or something along those lines.

Greg made him this awesome Angry Birds Star Wars birthday shirt

Playing with his new Angry Bird rocket launcher

Playing pin the tail on the Angry Bird

He said it was his best birthday ever... I think I believe him! 1 John 5:4 For everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.

2 comments:

Anonymous said...: How wonderful he looks! This is a wonderful milestone. I love your comments, Erin, about how God often asks of us something we can't even imagine. You have responded so deeply to His gift of grace and love---and you have your beautiful Connie, along with Celeste, MK , Karsten and coming little one. God is with you. Love, Sr J; March 4, 2013 at 5:22 AM
Nikki said...: Hello! I found your blog while browsing through a list of CHD blogs and I’m so glad I did! First, I’m happy to see Conway is doing so well. My son was born with TGA, ASD and VSD. He had two balloon caths done right after birth and his first open heart surgery when he was just a week old. His surgery was done at Mott as well. He is five months now and doing well. Still on the small side, but we’ll take it if that’s the only thing we have to worry about! Anyway, just wanted to say hello!; March 29, 2013 at 9:44 AM

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.