Care4Conway: First Cath Update

Wednesday, August 26, 2009

First Cath Update

Well, he was taken late partly because the case in front was running late so they had to set up an entirely different room, but even then, they had to wait for an anesthesia team to become available. Dr. Lewis (who has a killer accent, by the way) is the anesthesiologist who will be on the case. He said he did his homework for this case and is ready for what Connie will bring. Apparently it takes quite a bit to keep that boy down. Just learned today that he woke up in the cath lab on Monday and had to be given more drugs! No wonder he slept through the whole night!

Brynn called some time ago to tell us that things were going well and the next update would be from Dr. Bradley himself when they were finishing up. She also said that Dr. Bove did get in touch with them and apologized for not having spoken with us directly before now but that he would talk with us in the morning. He's had mulitple OR cases today. He has had a chance to review the information and says, yes, he still feels surgery is the best, most appropriate option at this point. Since Conway will be admitted again tonight, they will just take him down to the OR around 7:30am Eastern time and the surgery will start at 8:30 eastern. Time to turn those prayers up a notch! If they aren't able to ablate him tonight in the cath lab, they will try to pace him out of the flutter (which has never worked in the past) or use the catheters to get it to stop. If that doesn't work, then they'll have to cardiovert him again. This scares me. That would be a lot for his little heart right before tomorrow's surgery. Brynn says the risks aren't so much increased doing back-to-back procedures heart wise, but it's more that they don't like to use so much anesthesia so close together. He will be out all evening and then early in the morning get it again. That's a lot for a little body. Pray that he can handle it all.

2 comments:

Kim Froehlich said...: Erin & Greg,

My thoughts are prayers are with you guys. There is so much going on and I'm sure it's overwhelming. Hang in there, I know there are lots and lots of prayers being said for you guys.

Connie is a strong little boy and I know he is up to this challenge. Knowing you are laying the groundwork for a healthy little boy will help get you guys through these next few days.

Thanks for all of the posts. I will keep my prayers going and look forward to your next posts.

Sweet dreams Connie! All of this will be over before you know it!

Much love,
Kim; August 26, 2009 at 5:39 PM
Aaron and Erica said...: I'm praying for Conway right now. Thank you for keeping us updated.; August 26, 2009 at 8:09 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.