Care4Conway: More Firsts

Tuesday, November 13, 2007

More Firsts

Today at the park Connie rode on the swing for the first time ever!! He had been in our outdoor swing once or twice just before surgery, but this was his first time at the park (remember he couldn't be out in the heat of the summer because of his heart and before the weather got hot, he was too young for it). He held his head up just great. I wish I had a movie of it. He laughed out loud and smiled when he felt himself moving. It brought tears to my eyes to be doing normal things with him. Since we've been home, every time we've gone to the park he's either been in the stroller on continuous feeds or at home with Daddy napping. This is the first time it felt a little like normal, with both Mary Kathleen and Connie playing and having fun. Then Mook wanted to go on the see saw so I helped Conway sit on one side and they went up and down and had more fun. He is really getting into watching her and is so enamored by her. When she comes near him he tries to grab her and she giggles and thinks it is so funny. She's constantly saying to him, "Connie, watch this!" and then she does some trick for him.

It also makes me sad (self pity, I know) when I think about how some things have changed. As a teacher, I know how crucial it is for a child to have a variety of experiences to draw on for future learning. My fear is that since the kids can't have the same sort of or number of experiences they used to have that somehow their cognitive and social development is going to be affected. Sounds silly, I know, but Mook never gets to play with other kids anymore because we're afraid she'll bring some germ home and he never gets to leave the house (except for doctor's appts and to go out in the yard or for walks when the weather is mild enough). What kind of experiences will they have to draw upon?

3 comments:

Anonymous said...: Oh Erin,
Don't you worry about Mary Kathleen at all. Growing up we never left the house. no one ever invited 9 kids over for playdates. I never went to preschool and my only person to entertain me was my little sister. It didn't hurt my socialization one bit, look at me, Hospitality coordinator and semi-professional bowler! You are doing agreat job with her and you analyze things too much with your teaching background. My mom sat there laughing under her breath when the parents as teachers lady came to evaluate Ben and his "skills." She was like, "at this age I stuck you in a playpen and you were lucky if you had a toy to play with, I cetainly did not stimulate your cognitive ability". Anyway, there is not much you can do to change it right now, you have to protect that baby and she will be just fine. Hope to see you friday at mops!
Carolyn; November 14, 2007 at 6:44 AM
Anonymous said...: Hi Erin and Greg,
I hope God gives you peace with the 'stuff' you learned as a teacher. It's easy to buy into the world mindset and thought processes, but the promise is that His Grace is sufficient for Conway and Mary Kathleen (and you, too!) God put us in families-not in age segregated groups....we grow and learn to relate with others best in the safe, nurturing environment of our family. That's what it's all about-that's where the lasting relationships are formed and that's where we're called to grow together. Have fun together- it sounds like he's doing remarkably better, and I know God has great plans for you ALL! Sharon and all the Hutcheson's down the road.; November 14, 2007 at 7:24 AM
Anonymous said...: Hi Erin and Greg. I sure wish we could join you all at the Fund Raiser tonight. But I'm afraid that when we get off work at 5, and drive up, we'd be late anyway (by about 10 hours!!) Know that our hearts and prayers are with you all still. Don't worry about Mook's interactions. There is plenty with Celeste and Connie and you 2 for now. And she will do some catching up later on if she needs to. What a great family you have!
Can't wait to hear the next post!
Love from the SC Beckemeiers; November 14, 2007 at 12:18 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.