Care4Conway: 11/29/09

Saturday, December 5, 2009

2009 Christmas Card and More!

Three years of Miracles...

Conway's First Christmas

2nd...

2009

2009 Beckemeier Christmas Card

Thursday, December 3, 2009

Connie had school again today, his second time going. He recognized the classroom and was not too happy, but could be coaxed easily into playing. When I left he was engaged and cheerful. When I came back and hour and a half later to pick him up, he was sitting in a chair at circle time listening to the butterfly song but not sneezing them off his head. Seemed a little leary, but wasn't crying. As soon as the song was over, he walked toward the door and cried, "Mommy". He couldn't see me, but was so sad. After class, the teacher said he'd been that way most of the time. She said that he wasn't as upset as he was the first class, so that is good. It's too bad that after one more class he's got another two week break before classes resume in Jan. What he needs more than anything right now is to go enough to actually get used to it, but I guess that's not our choice!

After such a traumatic morning, I picked him up we headed straight to the St. Peters Wal-Mart for the kids to get their second dose of the H1N1 vaccine. Poor baby! That was no reward for being brave and going to school! The lady who gave the shots was not gentle AT ALL. Even Mookie cried and she never cries for shots. Hopefully they can stay flu-free the rest of the winter.

Wednesday, December 2, 2009

Out of Order: Some Thanksgiving Pics

MK when she was so nauseous. Yes, we did give the Marriott their ice bucket back!

Napping on Great Uncle Doyle's bed. The farm wears a boy out!

Con and Mook napping on Cousin Abby's bed. The suburban park wears a boy out!

Mary Kathleen and Cousin Ainsley.

Visit with Santa

It was very brief as he is still petrified of the man. He did enjoy the other activities at the parents as teachers holiday event but then remembered that his monkey lovey was in the car and started whining for it. I found a package of skittles in the diaper bag that seemed to keep him content for a bit while Mookie finished her crafts. Mary Kathleen brought the parent educators to tears when Santa entered the room and she ran up to him and threw her arms around him. It was so cute!

Finally content...thanks to Skittles!

Still traumatized from being touched by Santa

Still scared

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.