Care4Conway: Mid-day update

Sunday, May 3, 2009

Mid-day update

Dr. Bromberg has been in and reset the pacemaker to 100 bpm. He was hesitant to turn it too far down, too fast yesterday. He was happy to hear that he had a restful night and kept down some crackers and cheerios. He and Dr. Samples would like to see him awake a little more and not so lethargic, but more playful and eating better. He said he probably shouldn't have made any promises yesterday about turning this failure around just by lowering the rate. With Connie coming into it with a couple of strikes already, meaning that he already didn't have normal function due to the leaky valves and somewhat stiff LV, that it was unrealistic to think that he'd bounce back very overnight. He said it may be more of a four or five day thing. He's hoping he is better clinically and that he can stop the milrinone soon. Ideally it is a 24-72 hour fix. If he doesn't tolerate coming off of it or doesn't improve drastically from where he's at now in the next four or five days, he thinks it may be time to take a look at the valves (via cath) and talk about whether it's time to repair or replace a/some valves.

Overall, he's pleased with the progress. His lungs sound better than yesterday. He's going to give him more Lasix today though which should get rid of some more of that fluid and make him feel better. He'll get a venous blood draw tomorrow to check his INR levels for the coumadin and probably get that again on Friday.

Say a special prayer for Cece today. In about 45 minutes she is set to receive her First Holy Communion. The chaplain came in today to offer prayer and communion and I told her about Celeste and we said a special prayer for her.

Will update more if anything changes. . .

1 comment:

Natalie Bourque said...: I am so glad to hear that things are looking up... Keep your positive attitude...He feels it!! God bless you and your family through these times and always.. natalie bourque; May 3, 2009 at 9:12 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.