Care4Conway: Busy Day Tomorrow

Sunday, June 28, 2009

Busy Day Tomorrow

Tomorrow we have a very busy day. Our fridge died on Friday so our new one (well, new to us--we got it from a used appliance store) is being delivered in the morning.
After that we are off to see the pediatrician and then a couple hours later the cardiologist. The plan is to do an ekg, possibly an interrogation, and just a good look-over. I don't think an echo is on the schedule, so hopefully it won't be a two+ hour visit. Really it can be as long as it needs to be to make sure he's fine. We'd appreciate all the positive prayers and thoughts we can get. We've got a couple of med questions to go over and lab results and such and hopefully no surprises. Somewhere in there we'll have to get to the grocery store and restock.

Not much to report. Connie is finally in love with swimming! He spent two straight hours in the pool Saturday evening and another hour late this morning. His favorite thing to do is be thrown up in the air. He also likes to pretend to push Cece down over and over. He is really improved by leaps and bounds in his balance and his ability to stay upright even when the waves kind of knock him around. I think regular time in the water will be good for his gross motor development. The water goes all the way up to his chest! He spent a lot of time indoors last week because of the outrageous heat but we went to the park today and he fell asleep in the swing. His appetite is pretty hit or miss and he keeps throwing us little curve balls that make us keep an extra close eye on him, but so far, so good.

We'll update after the appts.

1 comment:

Annie Whitelaw said...: Praying that all goes well today!; June 29, 2009 at 9:59 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.