Care4Conway: Cath Update

Tuesday, April 15, 2008

Cath Update

They took Connie back about an hour ago. He got a little versed in his tube before hand and it kicked in quickly. He was carefree and zombified in no time at all!
They told us they will come with an update around 10-10:30. The procedure is supposed to last around three hours. We are waiting in a private room where he will "recover". This is our first experience with Children's Hospital and we are very impressed. From the atmosphere to the staff, it has been top-notch. I feel like writing them a letter to tell them so!

Dr. Balzer came in before they took him and reviewed the procedure and the possibilities. He "doesn't think" he'll have to do anything, based on what he saw on yesterday's echo. He said that the branch pulmonary arteries weren't visible in that study so he's not certain. He said if intervention was needed he doesn't think ballooning would work and he'd probably have to use a stent. The problem with stenting is they have to use an adult sized stent which would cause a pulmonary valve leak. I moaned about that because he's already got such a bad leak on the aortic valve. He said that he's actually got some leakage on both valves at the present time but that they are both MILD. He said that from what he saw yesterday they are MILD leaks. I wasn't going to argue with him. He's the doctor. If what he says is true, though, that means that Connie's Aortic insufficiency is not mild, not severe! Praise God. I guess He kept His promise when he told us on Easter that it was time for Connie to be healed. Slowly but surely, his heart is getting better!

We'll update more when we hear. We've also got some cute pics from this morning but I forgot to bring the cord to upload them.

Thanks for checking in.
Erin and Greg

1 comment:

Stacie said...: I'm glad that you're getting such good care there. My thoughts and prayers are with you and Conway today. Take care.

Stacie Kuhlman; April 15, 2008 at 9:56 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.