Care4Conway: Details

Wednesday, June 17, 2009

Details

Now that I'm on the laptop and it's easier to type, I'll give some more details about tonight. We went to mass and the last few minutes of it he was not right. He had this look on his face like he knew something was wrong. He got very quiet and still and laid his head down. We left and went home and as soon as we got in the door he threw up. I called Dr. Bromberg's exchange (it was now about 8:10 or so) and Dr. Bruns was on call so he called back a few minutes later and told us to take him down to Children's since that's where they were planning to TEE and Cardiovert him anyway later in the week. We got here to the ER and I heard them telling people that the wait was over 3 hours to see a doctor! I very politely told them that he was due to have a procedure and could they direct me to a place to wait that was the least likely for him to catch something (coughing, sneezing, etc everywhere!). They gave us a private booth so to speak and it wasn't too long before we got seen.

He vomited again after his chest x-ray, which showed his heart is enlarged (it usually is some anyway) but no fluid so that was good. The EKG didn't even pick up on the flutter, just like St.John's didn't catch it in the ER either. Cardiology got involved and came in for an echo. The fellow thought his function looked pretty good. Then Dr. Johnson, another cardiologist came in and examined him and took some history and then went to look at the echo. When he came back, he said that he doesn't think that dehydration is our main issue here (no wet diapers since yesterday afternoon) and that his heart function is a little down from the echo that was done the morning he left the ICU here back in early May and definitely down from the echo done before his cath here in April '08. They are going to get him moved up to the CICU and monitor him tonight, giving him a slight amount of IV fluids (they don't want to give him much b/c with decreased heart function, he'll retain it and cause more work for the heart) and then talk to Dr. VanHare and Dr. Bromberg in the morning to come up with a plan.

About the labs. . .They gave him a shot like lidocaine in his hand so that he wouldn't feel the IV. Apparently it can cause you to "lose the vein" and that's what happened. The nurse fished around for ages looking and never could get anything. Of course he had just fallen asleep when she came in to do it. Then she went and got another nurse and this one tried the other hand. I said for her to skip the numbing and just get it over with. By this time, he'd been screaming for about 30 minutes. He was sweating and couldn't hardly catch his breath. As I type this now, he's STILL doing that whimper in his sleep thing. She got in right away, but not in the right spot, so it came very slowly. Plus, with him screaming, it made it even worse. The line was good and was able to flush so we kept it for an IV, but they weren't able to get all his labs done. I'm praying they wait until AM to try again. They did get a lactate level on him and it is elevated, another sign of distress to the heart.

1 comment:

Alanna Trauterman said...: Hi Erin. I hope Conway's morning is going better. You must be exhausted. You both will be in my thoughts and prayers today.

Love Alanna; June 17, 2009 at 6:31 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.