Care4Conway: Doctor Visit

Saturday, September 20, 2008

Doctor Visit

We saw the pediatrician today. Both Connie and Mook. She's had whatever bug I still have (going on almost three weeks for me) since last weekend and when I called his office last Thursday the nurse told me that if she still had it on Saturday to give them a call. Well, sure enough, Connie woke up with a runny nose and cough today so I went ahead and called and they had me bring them both in. I was glad I did go in because Mookie actually has "a pretty bad looking" ear and he decided to start her on azythromycin. He wrote the script for Connie but said to hold off on filling it until he for sure needed it. His ears are both fine and his symptoms are pretty mild compared to hers. Surprising since he usually gets everything and gets it worse. Maybe this means he won't have to be homebound all winter again like last year. We're keeping our fingers crossed that when we go to the cardiologist on 10/6 that he tells us Connie is okay to be in public from Oct-April. The pediatrician has us coming back for a recheck on 10/6 also and they'll both get their flu shots/mist at that time. We discussed whether or not Connie will be getting the RSV vaccine, Synagis, this year. It is a monthly shot (two actually) from Oct/Nov-Mar/April. The doctors have already been discussing it and they are sort of on the fence. They feel like his risk is much lower than it was last year, but they are keeping in mind that he has complex heart disease and is under two. They are going to write for it, but it all depends on insurance. I'm told the vaccine is close to $2000/injection and they are very stingy with who qualifies for it. Since our insurance is changing 10/1, this may complicate things since that is about the time they look for approvals. I guess we'll wait and see.

We'll keep you posted on everyone's health/upcoming appointments.

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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.