Care4Conway: Great Night

Saturday, August 29, 2009

Great Night

Connie had a great night. He settled down with one dose of Ativan and had nothing after that. He's now on room air as he d/c'd the nasal cannula himself! The plan for today is to go down on his morphine drip, get off the dex, decrease lasix to Q12 from Q6 b/c he's putting out more than what his going in, and watch his crit. He's a little borderline, so if he needs volume, it will probably be blood. They want to get him eating today and they are splitting the mediastinal chest tubes so that they can tell if either one has slowed down enough to come out. That decision will probably be made tomorrow. They're keeping the arterial line in for today, but I will still be able to hold him. He's been such a good boy. Greg stayed with him through the night and when he came back to the room he said that Connie did some cute things but I was so tired I can't remember what they were. I'll ask him later after he naps.
One thing they are watching are some arrhythmias. I'm not sure what exactly, b/c it was during the night, but he's having extra atrial beats, and quite frequently. The night nurse felt it might be due to the way his pacer was programmed in the OR, but on rounds they discounted that and said it was fine and the ventricle was sensing the beat and responding appropriately or something to that effect.

4 comments:

Lisa P said...: OH what a great update! I'm so relieved for you all that Mr. C had a peaceful night - and on minimal meds! I'd be willing to bet that most of his agitation was from that doggone breathing tube - so glad its gone. Keeping fingers crossed for a GREAT day!! Can't wait for you to be able to HOLD HIM!!

XOXO -
Lisa P.; August 29, 2009 at 9:21 AM
stove said...: Yay Connie!! He knew he was ready for room air!; August 29, 2009 at 9:38 AM
Anonymous said...: So happy to read first thing this morning that Connie had a good night. Will pray that he has a great day and eats a little something.
Mindy; August 29, 2009 at 10:13 AM
H. James said...: So glad he had a good night and is holding his own off the vent. Maybe his extra beats are due to something simple, like low potassium. We'll be watching for more updates!; August 29, 2009 at 11:12 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.