Care4Conway: January 2012 Update

Monday, January 16, 2012

January 2012 Update

Some of the photos I promised...
MK had her first week of school at the Academy of the Sacred Heart. It seems to be the perfect fit for her and the answer to our prayers! Her teacher sent several pics. Here is one from recess.

And Conway is doing much better with keeping his glasses on. He had just started getting used to them and the frame broke! We got them fixed and he's back to looking sharp!

In mid-December he sang in Assumption Preschool's Christmas program. Even though he only attends in the afternoons most days and the rehearsals were in the mornings, he learned all they lyrics well. He LOVES to sing. Here he is in his dressy duds.

We also attended school's Breakfast with Santa for the obligatory photo with the jolly fellow. Karsten wanted nothing to do with him (or, as I've mentioned before, ANYone else besides parents and grandparents), but the kids had fun. Conway told Santa what he wanted for Christmas and then as soon as he got down off the stage he asked me where the table tennis set was. He actually thought it would appear then and there. I had to explain to him that there was a waiting period and it wouldn't be until Christmas morning that he'd be seeing the present.

...and of course there was Christmas morning. Conway got is still big into bowling so that was the prevailing theme yet again for him. He got a new piggy bank,

and his favorite, an automatic return bowling lane!

As always, thanks for looking in! We are so blessed to have so many people thinking of and praying for us and our children.

2 comments:

Gil Beckemeier said...: Thanks, Erin. I love to get your pictures and updates.

Hope to see you, Greg and the children soon.

Grandpa Gil; January 17, 2012 at 3:34 AM
Anonymous said...: What wonderful pictures! It is great to see Connie and the other children looking so happy and great. I really apprecicate the updates, Erin, and I want you to know I am keeping all your intentions in my prayers. Sounds like Mary K is making the transition to the new school--all going well so far? Love and prayers, dear Erin. sr Josephine; January 17, 2012 at 4:26 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.