Care4Conway: 2/26/12

Saturday, March 3, 2012

The Birthday Boy

Connie thoroughly enjoyed his day. And to make sure he made the most of it, he got up at 5am! We had a mini party opening gifts this morning at 6am on our bed! Soon after he woke he wanted his favorite breakfast, McDonald's. Then he spent time watching bowling videos on YouTube and waiting patiently for 2pm. That's when his cousins Liam and Brooklyn and Aunt Mary (godmother) arrived and went to Brunswick with us for bowling and arcade games. He got several spares today (thanks to the ramp) and probably will require some PT for his shoulder given all the skee balls he threw. When we returned home, Grandma and Grandpa George and Uncle Terry (godfather), Aunt Celeste and more cousins Anna and Keegan were waiting to celebrate with us and share in the bowling birthday cake. He opened his presents, we sang, ate and he played. He just climbed into bed a very happy boy! Thank you to everyone who shared in this day with us, both in person or in prayer. You all mean so much to us.

Here are some pics from today.

Friday, March 2, 2012

Five Years Ago

...a beautiful baby boy joined our family. He gave us a little scare during delivery as there was some evidence of meconium when they broke my water. They brought in the NICU team to check him over. They gave him a good suctioning and said he was great. He was gone for his bath for what I believed to be a very long time, but we were more annoyed than worried. Before the nurse brought him back, she came in to deliver the news that they heard a heart murmur, but that it was very common and nothing to worry about. We had no reason to believe anything was wrong. We enjoyed the next two days with our new addition, so grateful for the smooth delivery and the fact that he was born at term (ON his due date, just like Mary Kathleen!) and was a very hearty 9 lbs. 2 oz. (also just like his sister, Mary Kathleen!). Here are some photo memories from that day:

Monday, February 27, 2012

Pre-Op Check-Up

Well, Conway wasn't due back to the cardiologist until mid to late March, but since he's scheduled to have this oral surgery on 3/6, he was required to get a full cardiac work-up. His appointment was today and here's the news we've got so far:
1) He looks great. His stamina and endurance are unchanged and we have no new concerns with that. He never complains of fatigue or chest pains so that is good.
2) His pacemaker is AWESOME! He has about 5.5 years of battery life left on it and his leads look good.
3) He had an echo and we don't have the complete report yet as it wasn't available for the doctor to read yet. The doctor did come in the room a few times during the echo and remarked that the tech told him things looked pretty unchanged. His gradient across the valve is higher, but it might just be an issue of the angle the measurements were taken. He's going to compare it to his last two and get back with us.
4) We were supposed to head over to meet with the anesthesiologist after the cardiology appointment, but the wonderful Dr. Bromberg made a phone call and spoke with the doc himself and was able to save us the trip. So, if the echo looks unchanged and Dr. Bromberg feels Conway is safe to have surgery on 3/6, then he will.

The Children's Heart Foundation is having a trivia night on 3/10 to raise funds for CHD research. We will be going and sitting at Dr. Bromberg's table! If you are interested in getting a table let me know and I'll pass on the details. There is also a CHD Night at Busch Stadium at the end of May. I believe the Cardinals are also having some sort of pre-game ceremony for CHD survivors as well. Tickets go on sale soon and a portion of the proceeds go the the Children's Heart Foundation. Again, let me know if this is something you'd like to join us for.

While we certainly wouldn't wish complex heart disease on anyone or their child, we are so grateful and forever changed by the relationships we've made on this journey. We know God has placed so many special people in our path and we thank Him every day for each and every one of them and each and every one of you!

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.