Care4Conway: Opthamology Appointment

Saturday, July 18, 2009

Opthamology Appointment

Connie went to the eye doctor yesterday morning and afternoon. Did he go twice, you ask? The answer is no, but his appointment was in the morning and we didn't leave there until the middle of the afternoon! We originally had an appt. for back in June, but Connie was inpatient at Children's then and we had to reschedule. The closest appt. time they could give us was for a month later, which we took. Our appt. was for 11:00 am. By 12:15, we still hadn't even been called back. Finally, we got called back around 12:30. We were back there for five minutes (at most) and the optometrist dilated his eyes and sent us back to the waiting room (which was overcrowded and had no seats available except on the floor). We went for a walk down the halls and came back in. About 40 minutes later, they called us back again and the same guy looked at Connie's eyes. After five more minutes of looking at his eyes, they sent us back out to the waiting room until the doctor was ready to see us. At 1:42 they called us back into the room where we waited until 2:00pm to be seen by the doctor. He came in and said that Connie's eyes are worse in relation to the far sightedness. Since he's non-compliant, meaning he isn't cooperating wearing the glasses, he's letting us go another six months without them. If, at that time, they are still getting worse or are not better, then he will need surgery to correct the far sightedness. It is laser surgery and is the same thing adults get (lasik). I asked if he was comfortable doing this on a cardiac patient and he said he's only under anesthesia for 20 minutes for this procedure. So, we'll see what happens when the time comes. The thought of surgery makes me a bit nervous, but it does seem better than a lifetime of glasses.

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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.