Care4Conway: Pulmonology Visit

Monday, December 17, 2012

Pulmonology Visit

Greg took Conway to Dr. Spivey this morning. Apparently he'd already gotten his records from his pediatrician and also spoken "at length" to his cardiologist so he had a pretty good picture of his history. Just that fact alone gave me confidence and made me really appreciate the coordination of care that was taking place. After a lung function test which appeared normal, he said that he feels these episodes we are seeing are more like recurrent croup than true asthma. The positive thing about this is that as children grow, so do their airways and they can outgrow this. It is also possible that the numerous intubations have led to some scarring in his airway, leaving him more susceptible to these breathing issues. For now we are treating it pretty much the same as we have been with the addition of a liquid steroid we'll keep on hand for severe episodes in which we are contemplating an ER visit. We'll follow up in 5 months unless things get worse. At this point, giving him a daily medicine seems uneccesary since he only experiences this a handful of times per year. Thank you for praying for wisdom for all involved in his care. It appears to be the best possible scenario and we are truly pleased with how well his physicians worked together to come up with the best plan for him.

2 comments:

Anonymous said...: HAPPY HOLIDAYS! I SAW ONE OF CONNIE'S TRUCKS THE OTHER DAY AND IT PUT A SMILE ON MY FACE!
TOODLES,
NURSE CAREN; December 17, 2012 at 3:42 PM
Anonymous said...: Hi l Luv little Conway and wish him, mokie, car-car, and cece and mom and dad a happy holidays. C u at school on Thurs. I send u my prayers.
Madeline Hammell; January 2, 2013 at 5:12 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.