Care4Conway: One More Thing

Wednesday, June 25, 2008

One More Thing

That's what I keep saying to myself. "It's not that bad, it's just that it's ONE MORE THING." Just got back from the pediatric opthamologist who decided Connie needs glasses. That's right, he'll be sporting spectacles after we get back from Texas (we're going for his cousin's baptism). His eyesight has improved, but he is still farsighted and also has mild astigmatism in both eyes. They said that these put him at a higher risk for developing crossed eyes. The doctor who examined him thought Dr. Tychsen would just send us home and bring us back in 6-9 months to check and at that time give him glasses if he hadn't improved. This was not to be. As soon as we get back into town we'll be going back down to Children's to get him fitted for glasses. He has to wear them at all times that he's awake except swimming and bath time. I'm so bummed. Not because of how he'll look or fear that he won't like wearing them. And I know that compared to where we were 10 months ago this is so irrelevant and not a big deal. It's just that it's one more thing. I know it sounds ungrateful, it's just where I'm at.

Baby Cate was called home to meet Jesus. Please remember her parents, Charlie and Ali, and her sister and brother, Ella and Dude (aka Charlie) in your prayers tonight as they mourn the loss of their precious, beautiful little evangelist. In her short 7 months here on earth her story managed to bring countless souls to Christ. God Bless the Cantrells.

1 comment:

Unknown said...: Erin,

Eli has to have eye checks regularly due to his arrhythmia med. It hasn't affected his eyes but the opthamologist has already told us he will need glasses for the same reasons as Conway-probably within the next 6 months.

Argghhhh!! :o)

I hated reading about Baby Cate. I'm so sad for their family. Unfortunately, I've been there with my oldest son. Definitely the most difficult moments of my life.

Take care,
Lisa; June 26, 2008 at 12:24 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.