Care4Conway: Preventative Measures

Monday, October 19, 2009

Preventative Measures

Despite our best efforts to stay well (not frequenting public or crowded places, good hand washing, pulling MK out of preschool, etc.) it seems that the dreaded swine flu has hit our home. Greg woke yesterday with a fever, cough and headache. He was ordered to be tested for flu but the test came back negative. Then about 5am Mookie started complaining about headache, cough, sore throat and had a low grade fever. She also had some 3 loose stools before 10am. She visited the pediatrician who swabbed her as well and her tests came back positive for BOTH the H1N1 flu and strep throat! Unbelievable. Her doctor said that if 10 people actually have the flu, only 6 will test positive on the rapid test, meaning Greg for sure has it too. His doctor confirmed this and prescribed Tamiflu immediately. MK is going on Tamiflu and an antibiotic for the strep. Connie and I are to start the preventative dose of Tamiflu since we are at a higher risk of complications from the flu (being a heart patient and me being pregnant). Connie's cardiologist ok'd it and also gave us a bit of good news. Last week he had blood drawn to check his BNP level, the one that measures heart failure. Remember this summer how he was in the 7000-8000 range (extremely elevated, meaning severe heart failure)? His number is now only 1800!!! That is much improved. While it is still elevated and we don't know exactly what it means in children, we do know it is a lot better than a couple of months ago so we'll take it. If the cardiologist were to check every complex chd kid in his office, he might find a similar number. We also know that his liver is a totally better size indicating no signs of heart failure! Now if we can just keep him from getting the flu... I asked the pediatrician about taking him to my parent's house or something and he said it was too late anyway. Just separate them the best we can and get him on the tamiflu. So, that's what we'll do. We'd appreciate some prayers for speedy recoveries for both Greg and Mookie and that the rest of us can avoid this plague!

6 comments:

Aaron and Erica said...: Praying that you and Conway stay healthy...; October 19, 2009 at 5:18 PM
Anonymous said...: You have our prayers in abundance that MK & Greg get better soon, and that you and Conway escape. Enough already!!! Love & prayers, Sr Josephine; October 19, 2009 at 8:35 PM
Anonymous said...: Praying for you all to make it through this flu fast and healthy.

Arlene Pearson; October 19, 2009 at 9:15 PM
Unknown said...: My prayers are with you. You have so much to deal with, hopefully you and Connie will be spared!! God Bless!; October 19, 2009 at 10:59 PM
stove said...: We're thinking of you guys. Glad you and Connie were able to get on Tamiflu quickly. Keep us posted!

Heart Hugs,

Steph and Lily; October 22, 2009 at 10:18 AM
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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.