Care4Conway: First Day of "School"

Thursday, November 19, 2009

First Day of "School"

Connie attended his first session of "Speech Group" which meets weekly for an hour an a half. It is a group of six kids between ages 2-3 and two speech therapists. They just play and have a snack and work on speech skills through playing. It's held at the same school where he'll attend preschool starting in March so we think it will be good for him to get used to the faces, the setting and being away from Mommy and Daddy. Mary Kathleen and I dropped him off and he was more than fine separating from us. A bowling set caught his eye so he was off in no time to go play with that. When I came back to pick him up, I could see through the window that he was sitting at the table with the other kids but crying very hard. Soon the teachers opened the door and let the moms in and he was very happy to see us but kept crying as if to tell me how terrible it was! We spent a few minutes with me asking him about what he had for snack and taking him around the room to let him point out things he did while he was there. He was still crying a little and trying to catch his breath. We went out for sub sandwiches and his favorite, chips, afterward and he was totally fine. During lunch I asked him if he cried today at school and he said, "uh huh." I asked him why and he said, "Mommy". I said he didn't have to miss Mommy because I will always come pick him up. We'll see how it goes in two weeks when he goes back. Next week they don't have class due to Thanksgiving so maybe he'll forget how upset he got there.

1 comment:

Anonymous said...: Wow! this was really a big day--tough for both you and Connie, I imagine. These first steps apart must be really hard to get used to. That is great news about your new baby boy! Please know I am praying for all of you, Erin. God is there with you, as you well know, and I am sure that all will be well. Love and prayers always--Sr Josephine; November 19, 2009 at 3:33 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.