Care4Conway: Michigan Keepsakes

Friday, August 14, 2009

Michigan Keepsakes

Connie's Grandma Marybelle and the daughter of a friend from church, Hannah Martin, handmade him pillowcases and a blanket for use during his upcoming hospitalization. They are all themed after things he loves--Elmo, Thomas, animals and monkeys! Below are the pics I took of them. Aren't they cute? Thanks Hannah and Grandma! My brother's family from Texas came up for a visit this past week and brought with them a special cross and pocket charm for Connie to take with him too. Thanks guys! There's even a pic of him eating a snack while I took the pictures.

This one even says "brave". . .

3 comments:

Anonymous said...: That is so sweet. Tell Grandma Marybelle I said hi too! I'd love to send her a letter or something as email not getting through. Take care, we are still praying. Laura in Ohio; August 15, 2009 at 1:43 PM
Anonymous said...: Angels come in all shapes and sizes. God's work, though mysterious, comes at His will. We've witnessed this today with a $1000.00 donation from a friend of a friend as Erin was contemplating how she was going to come up an additional $10/day to afford a frig while in Michigan. A huge thank you goes out to Jim and Pam. You are proof of God's hands at work.

Thanks to all who will be participating in the Dining to Donate night at Applebee's on 8/24. See you there between 5pm and 8pm.; August 15, 2009 at 10:07 PM
Donna Beckemeier said...: What a wonderful gift! I know a lot of love went into that.
I sure would have loved to be at the event to give you my love in person, but it's not possible. But know that we love you and keep you all in our hearts and prayers every day.
Can you send me Carol Stadlers email address?; August 17, 2009 at 10:19 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.