Care4Conway: Renewed Hope!

Thursday, November 29, 2007

Renewed Hope!

First, there are a couple of new pics to the right. I report tonight some good news and a renewed sense of hope. I was doing "homework" with him and he took some watered down baby food through a syringe. When I say some, I mean about a total of 6-8 mL. He had some great swallows and with a thicker but not too thick substance, he didn't drool out so much. He didn't gag once! Then for his feeding I gave him the rest of the thinned baby food through his tube because I've heard that some kid's reflux gets better when they have some more solid food on their tummy to weigh it all down. Granted, it wasn't true solids because it had to be thin enough for the tube, but it was thicker than the normal milk he gets so that's good. Then I used some rice cereal to thicken his milk and put that through the NG also. He gagged a couple of times but nothing came up!! I'm so excited. I didn't use the pump, because I was afraid it would clog, so it was pretty time consuming to give him syringe-ful after syringe-ful over about 30 minutes--but it was worth it if it helps him keep it down. If he does well again at his next feeding I will call the doctor tomorrow and see if his feeds need to be adjusted because of adding solids. Just pray that he digests it fine.

2 comments:

Anonymous said...: Happy Day! What a great post to read this Friday morning. Erin, I'm excited that you're taking charge and trying new things, hopefully more "solid" feedings will help with keeping things down. Although time consuming, I bet it was worth every minute! LOVE the new pictures :) The kids are soo darn cute. Thanks for sharing! I hope you have a great weekend, the weather here is suppose to turn icky tonight into tomorrow. Winter weather here we come! Hard to believe that tomorrow's the 1st of December, where does the time go?

Love, Caryn & family; November 30, 2007 at 9:43 AM
Anonymous said...: What a handsome boy he is!! Glad to see he is progressing! Baby steps...he'll get there :-); November 30, 2007 at 11:07 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.