Care4Conway: Tubes Out

Wednesday, September 2, 2009

Tubes Out

Connie got his chest tubes out a little after 8:30 this am. I don' think the versed really kicked in until afterward, but oh well. It was pretty quick. He also got his pacer wires out and is scheduled to be in the echo lab like five minutes ago. He's pretty wobbly after the sedation so we'll ride down together in a wheelchair. His prescriptions have been called down to the pharmacy so now it's just a matter of waiting to see how is x-ray looks tomorrow and getting his pacer interrogated before we can bust out of here.

7 comments:

Anonymous said...: Bust a move, girl! So glad to hear he's doing so well!!! Looking VERY forward to seeing you all soon! Let us know when you know you'll be home, and we can coordinate some meals. The LAST thing you need to think about right now is DINNER!!! :)
Love and hugs,
April Giesmann; September 2, 2009 at 8:27 AM
Diane Avink said...: Hope all the tests go well, so you can go home. Praying it goes well.It is great when the chest tubes come out.
Diane
Fellow Heart Mom -U of M; September 2, 2009 at 8:43 AM
Lisa Pappalardo, Grant, Nate and Scott said...: Oh thank goodness those mean old chest tubes are out. I'm sure he's going to be so much more comfortable! Keeping fingers crossed for a good echo!; September 2, 2009 at 8:48 AM
Rachel Anderson said...: Looks like great news! His eating habbits sound just like Nathan's - doesn't want to touch anything one minute, then acting like he's starving the next!; September 2, 2009 at 8:51 AM
Anonymous said...: I know this is a crucial time, with these tests to finish up--I am praying that all is perfect and you will soon be home. Love and prayers, Sr Josephine; September 2, 2009 at 10:39 AM
Aaron and Erica said...: It sounds like you are close now...I know you will be so thankful to get home! Praise the Lord for this quick recovery!; September 2, 2009 at 1:17 PM
Anonymous said...: I am so glad to hear that he is doing so good. My thoughts and prayers are still with all of you.

Christy Wootten; September 2, 2009 at 4:10 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.