Care4Conway: Something's Up. . .

Tuesday, January 20, 2009

Something's Up. . .

. . .but we don't know what exactly. Connie threw up several times Sunday night and was fine yesterday. Then early this morning (3:30 am to be exact) he woke up crying and vomited several more times. This morning he was fine again and kept down what he had for breakfast. We called the pediatrician because it just doesn't seem like some sort of stomach flu bug if he's fine all day and keeping down his food and then at night throws up everything he's had all day. Something is keeping him from digesting his food and we're afraid it's that his leaky aorta has gotten worse and isn't getting enough blood to the digestive tract so that it can move the food through like it's supposed to. Dr. Davis checked him out and he has no fever, no diarrhea and no other symptoms. he doesn't feel it is a stomach bug. He thinks it might be some acid reflux and has prescribed our friend, Prevacid, for the next month to see if he improves. He also ordered some bloodwork so we headed off to Quest Lab for that. After waiting over an hour, we finally got out of there! Poor Connie did not like it one bit, but at least they got the vein on the first poke this time. They had to take three vials! Dr. Davis is checking his Digoxin levels in addition to the normal CBC stuff. We should find out later today if something is off with that. He said sometimes the heart meds can cause stuff like this. Maybe if he needs a different dose or a different med or something. I'm going to research it a bit while I wait to hear. I asked him what happens if he takes the Prevacid, bloodwork is normal and he is still throwing up at night. His answer was, "Then I call Dr. Bromberg." In other words, he would feel it was a heart issue and would be getting the cardiologist involved at that point.

I've been having bad feelings lately about him but I keep shaking them off thinking to myself that it's just been because I've been reading about a lot of other heart kids locally that we keep up with have been struggling lately and having to have interventions, etc. Whatever it is, it is in God's hands and He has the answers. We will continue to put our faith in him. Thank you all for praying.

1 comment:

H. James said...: We will be thinking of you and hope that the Prevacid does the trick. I am sorry you are getting an unpleasant dose of reality. Evidently we can never truly let our guard down with our heart kiddos! Thank you for the update.; January 20, 2009 at 1:55 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.