Care4Conway: Mid Morning Update (Weds)

Wednesday, June 17, 2009

Mid Morning Update (Weds)

I was applying for a job online (while Connie sleeps) when the nurse came in and said Dr. Bromberg's nurse, Colleen, was on the phone for me. As I was recapping the events of the last 24 hours, who walks in the door but Dr. Bromberg himself! He didn't even know Connie was here yet, but comes here every Weds. AM for cardiology conferences and saw his name on the board. He came in and examined him and then set the plan for the day. He is not getting his morning meds (which is good since he's sleeping and I didn't want to have to wake him-AGAIN) b/c they are going to start him on IV Amiodarone today and proceed with the TEE and Cardioversion sometime later this morning (Who knows when, really. After all, we are in the hospital!). Before they cardiovert him, Dr. VanHare is going to do some messing with the pacemaker settings to try to get it to tell us he's in flutter while he still is. The settings need some careful tweaking and it's kind of a numbers game now. Since he's on IV heart meds, he won't be going home today after the procedure, but there is hope, according to Dr. Bromberg, that he could go late tomorrow afternoon. We're not making any definite plans as of yet, but it's nice to know this isn't necessarily a week-long sentence!

Thanks for your prayers. Connie is getting some well-deserved rest now. Come to think of it, he'll probably sleep most of the day since he'll be sedated for the procedures. I guess he'll be a night owl tonight!! We've had a wonderful experience here and the nurses are really looking out for his best interest. One nurse who isn't even assigned to him, but to the patient next door, saw a sharps collector worker coming in to change out the bin and she stopped him to tell him to come back later, that this baby had been up all night and didn't need rattling around in his room right now. I was so pleased to see that!

2 comments:

Unknown said...: Trust in the Lord with all your heart, and lean not on your own understanding; in all your ways acknowledge Him, and He shall direct your paths. (Prov 3.5-6); June 17, 2009 at 10:16 AM
miareese said...: It was so nice to see your family on the weekend and thank you for sharing the pictures of Connie. He has grown so big!! Mookie too!! We continue to keep your family in our prayers. Much love Donna and Paul; June 17, 2009 at 11:22 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.