Care4Conway: Celebrating Life and Tolerating Life

Saturday, March 5, 2011

Celebrating Life and Tolerating Life

The first part of that title stands for honoring Conway's birthday this past week. On March 3 he turned four years old! Can you believe it? He wore his new bowling shirt to preschool and took bowling ball cupcakes to share with his class. Grandma and Grandpa George took us to Red Robin for dinner and we came back to the house for cake again! I think his favorite part of the day was wearing his shirt and getting a balloon from the restaurant. He just doesn't like for Karsten to play with his balloon!

The latter part of this post title is in reference to the fact that we often are forced so quickly out of the celebration mode and thrown into the reality of everyday life with Connie. On his birthday, he was sent home from school with a report from a vision screening that was performed there saying he needed to be seen by an opthamologist due to having a suspected lazy eye, or amblyopia. This was a shock to us as he has been followed by a phenomenal eye doctor since he was 7 months old, having check ups every six months. We were surprised at this development. We called his eye doctor's office and have a follow-up scheduled for March 21st. They did say that sometimes the screening tool can have a false positive, but that it is usually fairly accurate. Then Thursday night Connie spent most of the night coughing a barky cough. We thought for sure it was croup, as it sounded just like it. He visited Dr. Davis Friday and instead of coming home with a diagnosis of croup, we've now added Asthma to the list, along with three more daily drugs; nebulizer treatments of an inhaled steroid every four hours until he's able to go 48 hours without coughing, an oral steriod twice daily and an allergy tablet! He spent both Thursday and Friday nights awake, scared and struggling to breathe. The only relief we found was a steamy bathroom. Prayers that tonight is peaceful and restful are much appreciated. It's already 9:45 and he's still wide awake (of course that's thanks, in part, to the albuterol he's on) and coughing constantly the second his head hits the pillow. Right now his pediatrician thinks that his asthma is the type that is triggered by a virus and while most kids can shake it after a few days, it seems to linger and linger in asthmatics and they need breathing treatments in order to get over the hump and get better. We've even seen that be the case with Mary Kathleen, but we've never seen any of our children struggle so much for a breath. It was truly scary to witness.

Sometimes around here it kind of seems like the terror alert system that went into place in the US after 9/11. For today we're still doing what we do, just with a heightened sense of angst, alertness and worry. Our family's "threat level" is elevated for the moment. As always, we welcome your prayers and thank God that we're not in the same boat as many of our heart friends and families tonight. This has been a rough winter for many and so many are struggling with illnesses right now. If you have a moment, ask for healing and health for those kiddos too.

1 comment:

H. James said...: Happy belated birthday!! I somehow missed this update. I completely understand your "heightened alert " system, unfortunately. We did daily neb treatments with Bailey for a long time, but she seems to have outgrown the need for it and is on nothing now. Maybe (hopefully ) Conway will too.

Hugs to all of you!!!; March 13, 2011 at 8:12 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.