Care4Conway: Check. . .Check. . .Check. . .

Sunday, August 30, 2009

Check. . .Check. . .Check. . .

Everything that was planned for today is now finished other than the chest tube removal and move (planned for 11am). He's been graduated to a big boy bed out of the crib and is fighting sleep with everything in his power. He's a little mad at us b/c he keeps asking to eat and we can't let him until after his chest tube removal, but other than that he's in pretty good spirits. He required no PRN's of pain meds overnight, not even tylenol! He's getting his increased dose of benadryl now so hopefully the itching will subside. If he stays on this pace, he'll get off the morphine completely by tomorrow and then just be on tylenol. After that, the only thing keeping him here will be the drainage from the chest tubes. It could be a few days or a week, every kid is different. I told the nurses it will be so weird having to actually have instructions on how to care for his incisions at home since last time we were here, his scars were completely healed long before we saw St. Louis again. Dr. Bove came in and seemed impressed with our progress. He said he'll stop by tomorrow so we can get a pic of him and ConBon.

1 comment:

Lisa P said...: So glad to hear about the awesome progress!! I'm keeping my fingers crossed that the chest tube removal is going smoothly (I think it is happening now or may have already happened) and that Connie will be able to have something to eat soon. Don't worry about incision care - its not difficult and they'll send you home with everything you need! Can't wait to hear you are on the floor because that will be one step closer to HOME!

Take care -

LP; August 30, 2009 at 10:30 AM

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.