Care4Conway: Dad posting

Wednesday, May 6, 2009

Dad posting

Hi everyone, Dad here... I stink at writing so I'll make this short.

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU for saying prayers for my boy!!!!!

He's been awake for 45 minutes, and he actually woke up HAPPY and PEACEFULLY. He looked right at me and said "monk" while handing me his monkey-luvee. I actually burst into tears unexpectedly. I was deathly afraid of a Michigan repeat where it took him weeks to wake up. The joy in my heart right now is indescribable.

There's still an uncertain road ahead, but I think I'll stay in the moment for now.

Mary Kathleen is staying with grandma Marybelle tonight and Celeste is at swimming lessons. I was dying to get Celeste up here to see her brother before the cardioversion but it didn't work out. If you're reading this Celeste, your little brother is doing great and will be jumping on your stomach again in no time!

Love and eternal gratitude from the Beckemeiers!!

Dad

3 comments:

Aubuchon Family said...: Awesome news, Greg! Keep us informed when you can.

Steve; May 6, 2009 at 8:02 PM
L. Pappalardo said...: Oh man that's the best news I've had all day! I wasn't sure I was going to be able to go to bed until you posted. Good job Connie! I knew you were a strong boy!! Hope you get to munch on something soon!

Love, Lisa and Grant; May 6, 2009 at 8:18 PM
Faith M. said...: Hey "dad", we are praying for your boy. I know Erin from Heart 2 Heart and we are all praying for a speedy turn around, wisdom for the doctors, healing for Conway, and peace for you and Erin.
Also, I wanted to let you both know about an amazing blog that you might like to read: www.mycharmingkids.net I don't understand all of the electrical stuff with the heart, but the little guy on this blog has had every electrical problem possible and they even did an ablation and he is only 6 months old. Anyway, I think you will really like reading his story. His mom is an amazing writer. In fact, her blog is quite famous.

Sending lots of prayers and hugs,
Faith Mahoney (mom to Maggie Jane HRHS); May 6, 2009 at 10:43 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.