Care4Conway: More on Gus and Connie's 3rd Birthday Party

Sunday, February 28, 2010

More on Gus and Connie's 3rd Birthday Party

Gus has taken a turn for the worse. He's been losing a lot of blood. Losing it faster than they can replace it. He has to be on blood thinners so that his LVAD (pump) doesn't get clots, but that therapy is causing him to not be able to clot. Additionally, he suffered a stroke this morning and has blood on the brain, causing continual seizures throughout the day. This has affected his status on the transplant list, causing him to be removed for now. Please pray for this family and this child-that God will comfort them all. Greg and I have been pretty shaken by his story.

We invited grandparents, aunts and uncles and cousins over today to celebrate Connie's third birthday (coming up on Wednesday). He had a great time and even sang the "Happy Birthday" song to himself! It was so cute and so fun to think how far he's come. Speaking of how far he has come, we had to say goodbye last week to Connie's wonderful First Steps therapists who have been coming to the house weekly for the last 28 months. There were times that he would have 4 visits a week from the various therapists. He was down to just speech therapy weekly and physical therapy once every other month. He was recently evaluated by our local school district to determine eligibility and whether or not he will continue receiving services. We have our meeting with them tomorrow to go over the results and I'll let you know how it goes. We are so proud of how far he's come!

2 comments:

Unknown said...: Happy Birthday, Conway!

Wow, Erin. He is getting so big! The hardest part about turning 3 has to be the transition from EI. At least, it was for us. So hard to say goodbye to all those therapists who have spent so much time in your home, loving your child...

Praying for Gus. No baby or parent should have to go through all that.

Lisa in TN
Eli's mom!; March 1, 2010 at 9:18 AM
Unknown said...: The cupcakes are so cute!; May 30, 2010 at 8:18 AM

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.