Care4Conway: Grateful

Tuesday, August 25, 2009

Grateful

Praise God Connie had a great night. He finally got in a room about 8:45. Despite his roommate's alarms and frequent door opening and closing he seemed comfortable and peaceful. He was agitated and fussy around 5am so they gave him some tylenol and within 20 minutes he was back to sleep.

Dr. Dick (EP) was just in and went over some of yesterday's events and asked what Dr. Aiyagari found. I told him all of it and he said, "Let me tell you a little secret. Whenever you can avoid an operation, do it." Maybe this is all for a reason. Who knows. Maybe they'll say surgery is a no go. He thinks he looks healthy and then asked what meds he was on. When I told him, he said, "Well, he's on all of them already so we'll just have to wait and see what they (Dr.Bove) say." He said he was glad it wasn't him having to make the decision.

3 comments:

Yvonne Mallon said...: It is going to be OK. Dr. Bove will make the right decision. I really liked Dr. Dick. He rounded on the floor when we were up there. And you know what, he made a great point!! Avoid the big OR when you can. Good way to think about it!. So at some point, Connie will need he mitral valve repaired....maybe now or maybe in the future. But leave to them to make the right decision and be thankful for great LV systolic function and that he is looking so good!!
Continuing to send good thoughts and prayes your way.; August 25, 2009 at 6:56 AM
Lisa P said...: Hang in there. I know this is a tough, indecisive time, but I have to agree that if you can avoid doing surgery now, its a good thing! I know for parents, it always means a state of frustrating limbo when something like this is put off - so hard knowing that its coming at SOME point, but the when is such a challenge. The other good that will come of this is that if you and Dr. Bove decide to wait, I'm sure you will now start to be in closer touch with him and his team for status, etc. I know he'll make a good recommendation - he's seen it all!. Thinking of you all day - just give me a ring if you want to talk!; August 25, 2009 at 9:05 AM
Lisa P said...: ...PS...watch for Lan from Community Relations later today...probably after 4pm; August 25, 2009 at 9:06 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.