Care4Conway: No new meds

Thursday, July 16, 2009

No new meds

So, tonight at dinner, Connie was standing on the back of the restaurant high chair and it tipped backward and cracked him in the mouth. It cut the little skin between his gums and upper lip. We were worried it wouldn't stop bleeding with him being on Coumadin. Luckily, it did stop bleeding and he didn't seem terribly upset about it or act like it was hurting him so we dismissed it. A couple hours later, it occurred to me that he had a cut in his mouth and there might be a risk of bacteria entering the bloodstream which might lead to endocarditis (infection in the heart). I know when he goes to the dentist, he'll have to take antibiotics ahead of time to prevent this and so I called the doctor to see if he needed to be put on something in this case. Dr. Bromberg said that studies actually show that the bacteria that enters the blood stream during dental procedures leaves the body within 45 minutes, which is why the drugs need to be on board ahead of time. So, by the time I called, any bacteria would have already left his body, meaning there is no need for an antibiotic AFTER a cut in the mouth. He jokingly said that the thing to do next time is to put him on antibiotics BEFORE he hurts himself (ha ha). We do keep it interesting though, huh??

Ella has been rescheduled for her double switch on Friday, July 31. Please plan to join us again in prayer.

1 comment:

Anonymous said...: I'll try to remember the advice as well to give Lorelei antibiotics before she gets hurt as well. Hay the same thing happened to us once and heck ya we called the DR. So glad Conway is ok. This kiddos always keep us hoppin don't they.

Heart Hugs
Nicole Hoagland mom of Lorelei HLHS; July 17, 2009 at 8:58 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.