Care4Conway: Just Back From the ER

Wednesday, March 25, 2009

Just Back From the ER

with Connie. We left the house at 8pm and just made it home at 12:44am! Not too long after dinner the kids went out back to look for rainbows. On his way back in the house, he tripped on the threshold and hit his head on the door frame. He cried pretty hard but I just figured it hurt. I didn't see any marks right away. I sat him in his seat for some strawberries and when I finished slicing them, I saw the blood on his eyelid. He had hit that orbital bone and split open his eyelid right above his right eye in the corner nearest the temple. I called Dr. Davis' exchange and the nurses from Children's hospital called back. He was acting fine and it had stopped bleeding. It isn't very big at all and they asked all the questions that they ask for cuts and also the questions for head trauma. All checked out great except for one. When she heard that the cut was on the eyelid she said that the guidelines they have are to go to the ER. Doesn't even warrant a call to the doctor, it's supposed to be a trip in. Ugh. Greg and I really didn't think they'd do anything for it, but I was kind of glad to get a second opinion. We were advised to go into St. John's since they already have a record of him there and both his main doctors have privileges there. They were packed. There were kids all over the place who had obviously been puking because they were carrying around buckets with them. They were nice enough to let us wait in a little storage room that patients don't usually go in so that we could hopefully prevent Connie from getting any bugs. They didn't have any rooms open up until after 11pm. It was a long wait and lots of entertaining. It is exhausting trying to entertain a two year old when you don't want him to touch anything! He climbed up into his stroller and then jumped down about a gazillion times then when we finally got an exam room he jumped up and down on the bed about a gazillion times. He definitely didn't act like he needed to be there, but we had to follow the "protocol". Finally we got checked out and we were told that sometimes less is more and in the case of a "deep superficial cut" like he has, it is better to leave it alone. We will wash it daily with soap and water and apply an antibiotic ointment that is safe to get in the eyes. Other than that, it should heal nicely and the only time we'll be able to notice it in the future is that it may stay white when the rest of his face tans.

I'm off to bed. Hopefully he'll let me sleep in tomorrow (I mean. . .today)!

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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.