Care4Conway: Chest Tube In

Friday, August 28, 2009

Chest Tube In

Connie just received his new left chest tube and the procedure went very well and we should be allowed to see him in about 15 more minutes. Pray that this is the final hurdle and he now moves in the right direction. He's getting a little harder to settle, needing the morphine and ativan together rather than one or the other. They haven't yet gone up on his dex because we're hoping to extubate later afternoon or night and it wouldn't really kick in until then anyway so they're trying to hold off on upping his drips any. He's arching his back some and crying when he wakes up. Poor baby. It will be so much better when he gets that ET tube out and loses his LA line. Then he can have some more freedom.

7 comments:

Anonymous said...: All of us at UMMC in Batavia, New York are thinking and praying for Connie and his family.; August 28, 2009 at 12:49 PM
krissy ringo said...: we are waiting for that tube to come out too! who will win the race? :o); August 28, 2009 at 2:16 PM
Anonymous said...: Thanks for the updates, Erin. Looks like Matthew's tube is out...Connie's is NEXT!!! Still saying lots of prayers for him. Went to Mass this morning especially for these two little boys. Father Joe is praying lots for Connie, too! We hope things go smoothly for you from here, so you can finally rest!!! Big hugs and lots of prayers....
April Giesmann; August 28, 2009 at 4:11 PM
H. James said...: Caught up on the updates again. Hopefully the new chest tube does the trick to improve that lung. Hopefully the bleeeding stops and his crit stabilizes. We are thinking about you!!!; August 28, 2009 at 4:25 PM
Ellen McDonald said...: Erin, I'm glad that the surgery went so smoothly and hope that the post-op gets better and the new tube helps. sending good thoughts your way!

Ellen (yahoo l-tga, mom to enzo); August 28, 2009 at 4:31 PM
Anonymous said...: Continuing to keep Connie in my prayers. sounds like things are definately going in the right direction. I too hope the tube comes out soon and that he is totally ready for it.
He looks good in the pictures.

hugs and prayers,
Wendy, Andrew's mom L-TGA group; August 28, 2009 at 4:47 PM
Unknown said...: Praying for you all, Erin.

Lisa @
All That and a Box of Rocks; August 28, 2009 at 5:05 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.