Care4Conway: Surgery Scheduled and Facebook Page

Friday, June 1, 2018

Surgery Scheduled and Facebook Page

Hello to everyone in Conway-land! My how things have changed since the last post on this page! For those who aren't regular facebook users, you will be happy to hear Connie has a new baby brother, Hugo. He was born on March 15. School just let out for the summer last Friday and the kids are loving summer. MK is still playing tennis and is taking Geometry this summer. She will start 8th grade in the fall. Conway is playing golf, skiing, doing archery with DASA and will enter 6th grade. Karsten just made his first communion, is LOVING golf this year, and will begin 3rd grade. Frankie just graduated from preschool and will start kindergarten. All four of them go to my school, St. Charles Borromeo, where I teach 4th grade. We love our SCB family! Celeste just got her driver's license and will be a senior next year. Can you believe it?!

I'm updating today to share that it is finally time to replace his pacemaker that was placed when he was five. He also has a bad atrial lead. It has gotten so damaged that with any activity, his heart basically goes into atrial fibrillation. This has impacted his quality of life in recent months so we are relieved to be getting this done at last.

We will travel to Ann Arbor on Friday, June 8th. His pre-op appointment is at 2pm on the 8th. Please pray for safe travels as we are taking the whole crew. Then on Saturday, the hospital is hosting a reunion for heart center patients (this is the one we have attended three times before). Sunday we will find something fun to do in Ann Arbor and then on Monday is his surgery day. If all goes well, we hope he will be discharged 24-48 hours following surgery. The plan is to place a new atrial lead transvenously and replace the generator in his abdomen. There is a chance they will discover once they get in there that his veins are too small for transvenous placement. If that is the case they will send us home and reschedule another surgery to reopen his chest and place the lead epicardically. We are hopeful this will not be necessary as we'd like to see him have as much of a summer as possible. Even with the first option of transvenous lead placement, he still will not be allowed to lift his hand above shoulder height for six weeks following surgery. This will make swimming, golf, and summer camp a no go for him.

Most of our updates from here on out will be via a Facebook page we created to share his status more conveniently. You can like and follow it here:
https://www.facebook.com/Care4Conway-146862799441923/

Blessings,
Erin and Greg

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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.