Care4Conway: Moving again

Thursday, May 7, 2009

Moving again

Connie is moving to 7W. He is only moving there b/c they have more critical kids that need his bedspace. Maybe a post op kid or something. He is still going to have the same nurse and will not be considered "floor status." He will still be Cardiac Intensive Care Status and on the monitors and all. Bummer is he will be in a shared room :(

His echo is finished. He did great. Watched Max and Ruby and ate starbursts! I asked if it was a full blown one or just a quicky to check function and he said they wanted the whole one done on him since he's never had one here. There were three docs in here for it and they said he does have a unique anatomy! That's an understatement. It takes those looking at him for the first time a little while to figure out what is what in there.

I'll post again after we're all moved. They may wait until after his nap, if he ever does nap!

2 comments:

L. Pappalardo said...: Hey! I just left you a message. Ask them if there is any way that once you move you could be on the side by the window. The rooms are config'd in such a way that the side by the window is a little bigger, and also, of course, further from the commotion and the door. Also, if I remember correctly, the side by the window has a parent sleeping space - like a little day bed - and the side by the door only has a recliner...If you can't get a space like that initially, you could plead your case that your kid has gotten no sleep, and maybe they'll let you move. Call me if you need me.; May 7, 2009 at 10:12 AM
Anonymous said...: Thinking of you!! Love you! Let me know if you need anything!
Laurie; May 7, 2009 at 12:51 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.