Care4Conway: School has started... and so have the illnesses!

Wednesday, August 31, 2011

School has started... and so have the illnesses!

Connie's first day of PK4 was Aug. 17th. When we went to meet the teacher night he was especially excited about the pretend play area and making pizza. Since starting he's talked about the workbench and bowling. He seems to like his new teachers (all 4 of them). He's also attending Assumption's Preschool program in addition to the three mornings a week he goes to United Services. That transition was a bit rocky at first, due mainly to the fact that my classroom is connected to his classroom and he had some trouble understanding the boundary that first day. Since then he's done fine. It's a long day for him, but he seems to be outgrowing naps anyway.

Last Friday he wasn't acting himself and looked very sick. He had four immunizations on Thursday so we thought he was just having a reaction to the shots (after we panicked and thought it might be heart related... it's a reflex, can't help it!). We sent in a pacemaker tracing just to be sure and it looked fine. Saturday morning he woke up feeling great. Same for Sunday. Monday he went to school and seemed okay but at soccer practice was he barely participated at all. Early Tuesday morning (1:30am) Greg heard him wheezing loudly so he ran in to find him sitting up in bed struggling to breathe. He woke me up to get Connie a breathing treatment going while he called 911. By the time the EMT's got there, he was stabilizing but they felt he needed to be seen and they suspected croup. They were right. He was diagnosed with croup and given a dose of racimic epi and monitored for a few hours. He slept a lot on Tuesday but was ready to go back to school today. This afternoon when he got off the bus the driver said his teacher told her that he'd been complaining of a headache but still participated in activities. Mookie has been home sick from school herself these past two days with headache, sore throat and barky cough as well. I guess they both have a similar virus. Now tonight Karsten started up with a low-grade fever. I'm so afraid this is going to be a very long winter if it's already starting!

In better news, we are on the heels of a couple of big milestones at our house. Last Saturday and Sunday (8/27 & 8/28) were the anniversaries of his two open heart surgeries. His mitral repair and ablation was 8/27/09 and his big repair, the Rastelli-Senning double switch, was 8/28/07. Can you believe we've been on this journey for over four years?! Seems like 10 sometimes, but other times it feels like just yesterday. We took the family to Connie's favorite place on Saturday, Brunswick Zone. He played skee ball to his little heart's content. Then we went to Grandma and Grandpa George's house for a cookie cake and ice cream. He topped off the fun by watching some DVR'd episodes of Max & Ruby at their house. Saturday was fun, but Sunday was divine-literally. He started the morning at 8am mass where he received the sacrament of Anointing of the Sick (they do it every six months and it just happened to fall on the anniversary this year!). Then we went to the 1st Annual Children's Heart Foundation Heart Walk around Creve Coeur Lake and ran into some of the SLCH staff. Charlotte talked to us about camp next year. It's so unbelievable to me that next summer he'll be old enough to go to heart camp, Camp Rhythm, as a mini-camper. Those events really made the day special and memorable.

1 comment:

Annie Whitelaw said...: It's been four years that I have been keeping up with Conway and I still love to read the updates with how wonderful he is doing! I remember reading the blog in the beginning on the surgeries and seeing his pictures and I could not be happier to see how grown-up he is getting. Thank you for still continuing to let us "strangers" in on your lives and I will be saying a prayer tonight for the family to have a healthy winter!; September 15, 2011 at 10:23 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.