Care4Conway: Pre-Cath Work Up

Tuesday, January 4, 2011

Pre-Cath Work Up

Connie went to Children's today for his pre cath testing. He will have a cath tomorrow with Dr. Balzer. He was very brave-not the least bit nervous actually. He handles these things like a pro. He requested a lemon-smelling face mask tomorrow for when they "gas" him to sleep and wants to watch Bolt on his iPod while he lays flat for 6 hours after he's done with his "nap!" He amazed everyone there today. The last time any of them saw him he was in heart failure and some there felt that a transplant was his only option. Most of the people we saw today hadn't seen him since April 2008. He still had the NG feeding tube back then! I better get to bed soon since he's first case tomorrow. We will be leaving the house around 6am. Please pray that Connie has no fears before the procedure, that his pain is controlled afterward and that things go smoothly, both heart-wise and emotionally. Pray for the doctor's wisdom and that God will guide his hands. Lord, please bless Conway and let him know you are with him through this procedure. Shine on him and let all those we will meet tomorrow see you in us. In Jesus' name, Amen. If you are on Facebook we will be posting updates throughout the day there.

3 comments:

Jean Sundman said...: We will be praying that all goes smoothly and that you are at peace through out the day!; January 4, 2011 at 9:27 PM
Unknown said...: Happy and Healthy Thoughts are being sent your way!!!!
Nurse Caren; January 5, 2011 at 8:13 AM
Anonymous said...: I was out of town, so missed these postings until today, Erin. I did know about the cath, so was praying, but I will keep it up. I am so grateful for the peace you feel, and the awareness of being in the hands of God. Love and prayers always. Sr Josephine; January 6, 2011 at 2:01 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.