Care4Conway: Back on Diuretic

Monday, May 10, 2010

Back on Diuretic

For a couple weeks Greg has been concerned about Connie getting clammy. We tried to convince ourselves he was just hot from playing too hard but he was getting like that even when he was sitting still-just playing on the computer, etc. Right after he stopped the diuretic I thought he got a bit puffy and gained some weight (2 lbs.) right away but told myself he'd had a growth spurt and it was just my perception that he was so big b/c I was used to holding the baby all day so of course he would seem bigger to me. He's also been sleeping better than usual; taking longer naps, sleeping in in the mornings and not waking so much at night. It was a welcome change, but unlike him for sure. He's due to go back for a check-up next Monday, but Greg was uncomfortable waiting that long to let the doctor know about these changes. We called the office and after talking with Dr. Bromberg, Nurse Kelly told us to restart his diuretic, Aldactazide. We're bummed a little, but hoping it does the trick to get him back to being his usual self.

He's still got the cast on and goes back for a repeat x-ray on Wednesday. If the bone is not aligned, they are talking about having to surgically correct it. Please pray that it is healing fine and that he might be able to get a waterproof cast on at the next visit. Two days after it was put on he got it wet at school and it had to be cut off and replaced!

We went to Mother's Day Brunch with Greg's side of the family. Here's a pic where you can see his cast. It's hard to miss as it's as bright yellow as they come! He picked it out himself.

2 comments:

Emmett Joseph said...: Sorry to hear this, but glad that you caught it. I don't know about you, but I feel an immense pressure to recognize every little thing that is wrong with Emmett, because of his heart. Best of luck at the appt Monday--let us know how it goes!; May 10, 2010 at 2:01 PM
Anonymous said...: This is a wonderful picture of all of you! Nice to see you slim again, Erin! I suppose we can put the broken arm down to just being a normal boy, but everything is so precarious with Connie.I pray all goes well and that he heals rapidly. You all continue in my prayers. Love always, Sr Josephine; May 10, 2010 at 5:52 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.