Care4Conway: Great Report

Monday, February 17, 2014

Great Report

We braved the icy roads (which weren't very bad by 9:45am) to make the trip to Mercy and see our favorite cardiologist. Everyone was so happy to see him and couldn't get over how much he'd grown. Seriously, like four people in the office remarked about how old and tall he looked. After he got weighed and measured, it was official. He's grown 7 (!) inches in 18 months!

Nurse Kelly did his vitals and caught up with him on what he's been feeling like. He said P.E. is hard and that he gets tired, but that is nothing new. I actually think he is more tired from his physical/muscle delays and weakness than he is from a cardiac standpoint.

Connie waited patiently to get called for his echo. Here he was practicing taking "deep breaths" for the doctor.

He had his echo and had the added bonus of having his echo analyzed by an echo tech student along with Dr. Bromberg. Doctor told the student that if he could read Connie's, he could read any echo!

Next up was the doctor visit. He was getting a little squirmy and bored by this point, but was friendly as usual.

The doctor was pleased with his unchanged echo and thinks he looks great. He ordered some lab work to check his BNP level just to be sure it isn't creeping back up now that we're off of the Enalapril. He said to stay off of it for now and he'll see us again this summer just so we can get on a yearly summer visit schedule. He's going the last Monday in July.We didn't do a pacemaker check this time since we just sent in a reading in early January, but we'll continue doing that every three months and at the July appointment he will interrogate again.

We went downstairs for the blood draw and our superstar didn't even flinch. He is really growing up! In the past, he has always sat on my lap for blood work but not this time. He just hopped up in the chair and rolled up his sleeve!

We'll update when we get results, but are pretty ecstatic that once again, God has blessed us with a wonderful report and our Connie's heart keeps on beating strong. Thank you for your prayers!

2 comments:

H. James said...: Great report! Hope the bnp is great, too! !; February 17, 2014 at 9:11 PM
Anonymous said...: I am so glad! Thanks be to God. Do take care, all of you. Love and prayers, Sr J; February 19, 2014 at 4:54 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.