Care4Conway: Generosity

Tuesday, August 18, 2009

Generosity

We have been so blessed the past few days with emotional and financial support from family, friends and even complete strangers. We were surprised by a donation to the Care4Conway fund from friends of a friend, Jim and Pam Boehm, on Saturday night and then on Sunday we spent the day with family who threw a party in Connie's honor. Aunt Sam, Uncle Mike and Aunt Mary, Grandpa Jim, Aunt Carole and Grandpa Gil-your gifts are so appreciated. Even my parents have gone overboard pampering us and the kids lately. Mookie and I got to enjoy a pedicure thanks to my mom on Monday. Grandma Marybelle even surprised us with a quick visit to see Connie before he heads out of town! Also on Sunday, Connie got some pictures taken by a local photographer who has a passion for kids with "special needs". She was kind enough to come out to the club to take some pics of him on the course and in the pool. Thank you everyone for your support! Your prayers especially mean the world to us.

4 comments:

Lisa Pappalardo, Grant, Nate and Scott said...: Oh my gosh, Darcie's pics of Connie are beautiful! She captured the essence of a little boy just bursting with happiness and life! Outstanding!; August 18, 2009 at 3:33 PM
Unknown said...: I love the pics they look great. I am so happy you were able to have those done. We will be saying many many prayers for all of you and for the docs and nurses. I will pray for a speedy recovery and return trip home as well.

God Bless you all and Heart Hugs
Nicole Hoagland
mom of Lorelei HLHS; August 18, 2009 at 8:43 PM
H. James said...: I think I said this before, but Connie is so photogenic. He could be a model! Ha ha ha...

Thinking of you as you get ready for the big day(s) in Michigan. Let me know if you need anything.

Heather; August 19, 2009 at 6:48 AM
Unknown said...: Connie is such a handsome little boy...great pics.
Our prayers our with your family.

I'm sure you're already aware of this, but U of M hospital (pediatrics) is rated as one of the best in the country, so he's in good hands.; August 20, 2009 at 6:29 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.