Care4Conway: Free Day

Wednesday, July 11, 2012

Free Day

Today we had the whole day to do fun things around town to try and take our minds off of what is to come. The plan was to go to the beach/splashground in the morning and bowling in the afternoon. We slept in (we needed it!) and didn't get going until close to lunch time! He was dying to bowl so we went to Bel-Mark lanes first. He bowled three games and had a grilled cheese sandwich and milk. Then we went back to the hotel to grab our suits and head to Independence Lake. We got there, but on the way he said he had a terrible headache and was almost crying. He said it felt like a migraine. Sure enough, he threw up. We turned around and went back to the hotel and he threw up again before taking a very long nap. At dinner time, he woke up and decided to rally! We went to the Cottage Inn for dinner where Greg had what he said was the best pizza he's ever eaten. We walked next door for gelato. Connie loved the lemon blueberry flavor. We decided it was just like in the book Olivia Goes to Venice. A few blocks away was Pinball Pete's. Talk about a fun arcade! Connie got his fill of skee ball, air hockey and pinball.

Tomorrow is going to be a long, trying day for Conway. Patience is not his best attribute and there will be a lot of sitting around and waiting for various tests and appointments. Please pray that he is cheerful and loving to all the new people he meets.

4 comments:

Faith Mahoney said...: We are praying for you, buddy! Hugs to you, Erin!; July 11, 2012 at 9:11 PM
Jenna B said...: Praying for all of you! I know you have an amazing knack for coming up with creative things to help pass the time and create patience! Connie is very fortunate to have you erin!! Karolyne still seems tired from Tuesday! We are sending prayers all day.
Heart hugs,
Jenna; July 12, 2012 at 6:54 AM
Anonymous said...: Sending prayers and patience for Connie!
~~Charlotte; July 12, 2012 at 8:33 AM
Jenny said...: Sending thoughts and prayers for your family this week!; July 12, 2012 at 9:30 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.