Care4Conway: 5/24/09

Wednesday, May 27, 2009

Little Celebration

because Connie just got his last dose of Coumadin! According to the label, "if therapy with Generic Coumadin Warfarin is stopped, the blood thinning effects may last for 2 to 5 days after you stop taking it." Thus, we will keep up the helicopter parenting a few more days and then relax a bit and let him be a little boy!

Tuesday, May 26, 2009

Sleep Deprived Update

It is with heavy eyelids that I post this update! Connie has not been a good sleeper ever since the week before he went to the hospital. We are coming up on one full month of poor sleep in this house :( That week before he went in and he was feeling so bad he was restless and not sleeping well and needing us a lot during the night. Then in the hospital he was messed with every hour and when he'd wake up he got used to Mommy being right there every time. Well now that we're home, he's still not back in his good routine. He doesn't seem tired at his normal nap and bedtimes and he's a lot sillier than usual. It's like he's either super silly or super fussy and overtired. Not much in between. We have been trying to do all the "right" things but with maybe a little extra coddling than normal due to the fact that he was sick and we still aren't always sure if his behavior is something heart related or just a phase or what. I hope I don't sound like I'm complaining, because I'm really not. Things could be much worse and I'm just thankful we are home and things are as good as they are. I really just had to find something to write about since somebody gave me trouble today for a lack of updates ;) I'll post a new pic or two and try to get to bed. Sounds like he finally gave up.

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.