Care4Conway: Cardio Visit

Thursday, October 15, 2009

Cardio Visit

Today Connie went for his six week post op check-up. Really I think it's been seven exactly, but who's counting?! We started things off with bp and weight and all that stuff. He's gained two whole pounds in the last four weeks!!! We are so excited. Dr. Bromberg says that weight gain and appetite are a huge tell-tale sign of heart function and he predicted at our last visit that we'd see him packing on the pounds in no time. Sure enough, he was right. Isnt' he always?! Now his growth chart looks much better. It's finally trending upward again! Next stop was his pacer check. No interesting activity to report since the last visit (this is a good thing) and with that news, he feels comfortable adjusting the settings so that he'll go from his atrium being paced approx. 40% of the time to just 10% of the time. That should save some battery life too. Right now it is saying 5 years left with a range of 4.5-6 years, but Dr. Bromberg says now that he's adjusted it, it will be even longer. That's great news too! Then we went downstairs for chest x-ray and bloodwork. He cried for both, but the stickers he got in return were a huge hit (Diego, a scary halloween monster and Pooh Bear). Then it was back upstairs to talk about the x-ray and make a plan. No echo today as his echo 4 weeks ago was pleasing. X-ray shows marked improvement over 4 weeks ago so we're decreasing his lasix to 1X/day instead of twice. If, in 8 weeks, we notice no change with him (as in he's not laboring to breathe or clammy or swollen), we'll stop it altogether. We don't go back to the cardiologist for 4 whole months! Can you believe that the child who was in heart failure all summer and almost listed for a transplant now has a four month reprieve? Unbelievable. He is true testament to the power of prayer and what our Lord Jesus can do when we call out to Him. Dr. Bromberg sees no reason why he shouldn't start preschool in March like we're planning (we're a little freaked out about the germiness of it all) and thinks taking him to an indoor pool a lot this winter would be a good way to keep him active and burning energy. He also gave the okay for the H1N1 vaccine in a couple of weeks (if we can find one, hopefully!) and can't wait to see pictures of him in his dragon halloween costume. That's it for now. Keep tucking our little man in your daily prayers if you can. It's working!

2 comments:

Anonymous said...: What wonderful news! Yes, God is at work, and I will keep on praising and thanking Him. Be sure Connie and all of you are "tucked in my prayers."
Much love always, Sister Josephine; October 15, 2009 at 5:01 PM
Annie Whitelaw said...: I am so happy to read that the doctors visit was full of such great news! He sounds like one healthy and happy little boy. I will never stop praying for Conway or the rest of the family because you have all touched my heart.; October 16, 2009 at 7:31 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.