Care4Conway: From 2 to 16

Friday, August 8, 2008

From 2 to 16

My class size has just increased. Instead of using my Early Childhood Certification to "teach" my own two everyday, I will now be teaching 16 or so five and six year olds as the new kindergarten teacher at the same school where I used to work (also where I did my student teaching and where I attended 2nd through 5th grade). I was just hired today and school starts next Wednesday! Yikes!! I'll meet the kids and parents Monday night when they come for Orientation and I'll be in meetings on Monday and Tuesday morning so it'll be interesting to see how fast I can move to get everything in place by Wednesday morning when the kids arrive at 7:45.

Connie's doing well. His back up glasses arrived and they need to be made smaller. Not sure what we'll do. I think I'll just get some crazy glue for his first set to get that pesky earpiece to stay on.

Mookie starts preschool two mornings a week beginning on Aug. 19th so our little family is about to go through some pretty big changes. Please pray that we are more tender and patient with one another during this time of transition and that we will feel the Lord giving us strength and easing our anxieties.

Erin
p.s. If you are free Mon or Tues early afternoon, I'd love the help in my classroom. Call me!

2 comments:

Shari said...: Erin: I have not commented in a long time, but keep up with how your little one is doing. He is certainly one amazing little guy! Cute too! :) I have been reading about another little girl named Madalynn who has the same defect that Conway has. I thought maybe you would like to read about her and communicate with her mom. Their carepage is www.caringbridge.org/visit/madalynngarcia. Have a good week!; August 10, 2008 at 6:10 PM
Unknown said...: Erin,

Blessings to you and your family as you make these new changes in your daily routine.

We are making many changes this year, also, and it just isn't easy!

Take care,
Lisa Schaffer
(Eli LTGA); August 13, 2008 at 10:52 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.