Care4Conway: 11/22/09

Friday, November 27, 2009

Thanksgiving ER Visit

After all the festivities were over yesterday, Greg took the kids back to the hotel for a proper bedtime as the multiple days of no napping were taking a toll. Things didn't quite go as planned, but they both did fall asleep just before 10pm. I got to the hotel shortly after and as soon as I settled into bed, Connie let out a huge barky cough and then began to wheeze. The wheezing kept up even after 15 minutes in a steamy bathroom so we called the pediatrician's exchange and they said to get him to the nearest ER. The nurse who took the call could hear him through the phone and said with his history it and the fact that we didn't have a nebulizer or any albuterol with us definitely called for a trip to the ER. Greg looked one up on the computer and found TX Presbyterian 3 miles away. We got great service and were seen right away. Dr. Grimm (a horrible name for a doctor) was very nice and diagnosed him immediately with croup when she heard the cough. The funny thing is, he isn't coughing much and has no fever, but since croup is a virus, other virus related symptoms were suddenly explained. Like the diarrhea and the tiny red spots all over his torso and neck. He got a steroid shot which lasts 72 hours, the same length of the virus, and then she debated on whether or not to give him any racimic epinepherine (sp?). She wasn't sure about giving him any epi with his heart and specifically with his history of flutter. I told her that he'd had it after both surgeries as every time he was extubated he would have stridor and required two treatments each time. When she heard that, she decided he was a candidate for it but wanted to watch him on the monitor for an hour afterward to make sure his heart rate stayed okay. The monitor was behind me but I did see it up near 170 once. It didn't last long though and quickly started dropping into a more normal range. After waiting it out an hour, he got a dose of benadryl and was discharged. He was such a good boy and fell asleep soon after we got back to the hotel around 2am. He was up at 8am demanding hashbrowns so I guess he's feeling better already!

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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.