Care4Conway: Pacemaker

Wednesday, June 17, 2009

Pacemaker

The Medtronic Mad Scientists (engineers and field reps) have been working feverishly with the MD's today to understand what is going on, what happened, and what needs to be done regarding the pacemaker. At about 3pm, the pacemaker nurse and the field rep came in to adjust settings. I still am completely lost when it comes to understanding this portion of Connie's heart disease. Now the flutter will show up on a CareLink monitor transmission if the docs look for an atrial ECGM or EGM or something like that. It won't be missed again. His lower rate is now set at 100 and might come down before we leave the hospital. They tried him as low as 60 and his own rate never did kick on to override that. That means if his pacer malfunctioned or something and he wasn't being paced he would feel pretty miserable. As soon as she turned it down he started fussing. The other thing we should look for is the artery in his neck. If it is going fast or is very noticeable, we should send a transmission. The heartbreaking news is that he's been in flutter on and off for over 15 days. On the atrial arrhythmia report by month, there were a few brief episodes in April and then May is just covered in abnormality. I just wish he could tell us his heart feels funny. Poor baby. Hopefully the amio will do it's job and we can prevent future episodes. Dr. VanHare reiterated today the need for a catheter ablation, but that it would not be recommended until he is much bigger (like 7 or 8 years old). So, for now we hope that the amio is well tolerated and works! We'll leave it up to God since it's even pretty tricky for the smart people at Medtronic to nail down :)

1 comment:

Unknown said...: Our Prayers are with you guys and Conway! Lotsa Love, The Bakers, Kim and Fritz; June 17, 2009 at 4:22 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.