Care4Conway: Good News/Bad News

Thursday, November 15, 2007

Good News/Bad News

First, the good news. Well, great news, actually. All of you wonderful friends and family spent a total of $2730 on food last night at Chevy's. That means that they donated 15%, or $410.06, from those proceeds to Conway's fund. Thanks again for the super turnout!

The not-so-good news is that Conway is leaning toward the dehydrated side of things. His eyes are looking a bit more sunken, he hadn't had any bm's for almost 48 hours and his wet diaper output had backed off considerably. Combined with the vomiting, weight loss and sunken in soft spot, the GI doctor decided that he needed to be put back on continuous feeding overnight. We're pretty bummed, since this is a move in the backward direction, but we don't want him hospitalized for IV fluids! She told us to give him a glycerin suppository, put him back on the pump overnight and call her back in the morning to tell her how he's doing. He's already pooped twice since the suppository was given about an hour ago! I'm wondering if he was throwing up everything because he wasn't digesting well and was like a baby that eats too much and spits up. Maybe all that food not moving created an environment where he couldn't hold more volume down. The thing that makes me think it's not that though is that before he was fed each time we check for tube placement and when we pull the air that we put in back out, any milk that wasn't digested would come up and milk wasn't coming up. Usually that means that he's digested the milk, but in his case it's that he's thrown it all up. Anyway, we'll just wait and see what the doctor says in the morning. He's already in bed for the night and now Mary Kathleen found an egg decorating kit and since it has bunnies on the outside she's decided we need to dye eggs tonight. So, Happy Thanksgiving everyone. We'll bring the colored eggs!

1 comment:

Anonymous said...: I'm sorry to hear about Conway's dehydration. That can trigger so mnay other things. Can he have pedialyte? It is wonderful for dehydration. I'm continuing to pray for him daily. And I will ask our church to also. Keep the faith. Margie; November 16, 2007 at 7:42 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.