Care4Conway: Just Updating

Tuesday, June 16, 2009

Just Updating

Connie is doing pretty well today at home. He's been a tad clingy, but not anything like before. He's been walking around the house causing trouble, turning off computers and printers, aggravating Mary Kathleen and playing with toys some. He's hardly laid down at all! I guess pacing him (the lower chambers) at 100 (what Dr. Bromberg did yesterday) definitely helps him feel better and more normal. He didn't eat anything at breakfast, but did have a whole scrambled egg an hour later and then some cheez-its and yogurt for lunch (he passed on the applesauce, blueberries and hot dog). His diaper from overnight was bone dry, which surprised and worried me. He had a whole cup of water last night during the parish mission and then afterward he drank almost a whole cup of fruit punch.

I've put in a call to Dr. Bromberg to clarify some questions we have about the pacemaker and we've requested that his records from these last two flutter episodes be sent to the EP in Michigan, Dr. MacDonald Dick. The only reason for this is that we wonder if he might benefit from a new pacemaker since this one appears to be "not working properly". If that were the case, we would consider going back to Michigan for the surgery. I've also requested that Dr. VanHare, the EP at Children's who will be doing the procedure on Thursday, call me at his earliest convenience so that we can discuss these questions, as well as the long term plan for Conway regarding his rhythm issues.

Walgreens can't make the Amiodarone until Friday so St. John's pharmacy is now the place to go. I'm waiting to hear back from the compounding specialist there.

Other than that, not a whole lot has changed. We are just thankful that he is eating some (and keeping it down) and that he seems more comfortable today. Thank you for praying--don't stop!

Pics from the weekend. . .you can see that he was just not his usual smiley self.

2 comments:

Donna Beckemeier said...: Poor guy! He just keeps on plugging along, huh.
He's a little trouper. He (along with the rest of you) are always in my prayers.
May the good Lord's blessings be with you all.
Aunt Donna; June 16, 2009 at 5:13 PM
Anonymous said...: Dear Erin, Greg, Connie and Mookie,
I have been thinking of you and praying for you constantly. I hope all can be resolved for Connie without further problems. He is God's precious boy. I pray that the rest of you stay strong and trusting. All the Sisters here are joining in prayer. Love, Sister Josephine; June 16, 2009 at 8:37 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.