Care4Conway: Big Deal to Us!

Monday, August 4, 2008

Big Deal to Us!

I just wanted to put a quick post up about how last night was the first time EVER that Connie did not cry, squirm, scream, fuss, writhe or throw a fit about getting his teeth brushed before bed. He opened up and let me brush as long as I wanted. No gagging. No fighting. Sometimes it's the little things that can mean the most. With all we've been through these last 9 months it's starting to finally feel like he's on the verge of being a 'regular' kid.

His OT will be so excited to hear this news, along with the news of the progress he made eating over the weekend and yesterday. He's been eating more table food and less purees. Over the last few days, some of the foods he's eaten that haven't been mashed or blended include: pork tenderloin, cheese, scrambled eggs, green pepper, strawberries, cheez-its, a chunky ice cream treat, dry cereal, pop tarts, peas, bologna and a few other things I can't remember right now. After he's done eating, he usually sticks around close to the table to cruise around it while we are finishing up. He makes a lap around and then stops to ask Greg or I for a bite (and he actually is making a "B" sound sometimes) and then finishes that lap around the table and when he gets to us again asks for another bite. It's pretty cute.

His glasses need to get repaired again, but I'm not taking them back in until his back-up pair arrive. This time, the little loop that goes behind his ear keeps coming off. I took them in and they said they don't want to glue it and they'd send them back in, but I'm waiting. I don't want him without them for another whole week!

1 comment:

H. James said...: Congrats! I can totally appreciate those milestones, as a fellow heart mom! What a big boy he is getting to be!; August 4, 2008 at 9:15 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.