Care4Conway: GI Follow Up

Wednesday, March 12, 2008

GI Follow Up

Conway had a follow-up appt. with Dr. Brady yesterday and his weight is right on the curve where it should be. She's happy about that! I shared with her the screening results and she was also thrilled. I asked about "The Feeding Team" at Cardinal Glennon which is composed of a psychologist, dietician and OT and she said that for his age, she recommends we see a speech path at Children's that she's worked with in the past. So, we're waiting to hear back on what that might entail. The best news (for me anyway) was that we are going to start slowly introducing him to Peptamin Jr. formula and weaning off the breastmilk. That means there is an end in sight to the pumping! We'll start with his overnight feeding making it 1/4 Peptamin and 3/4 breastmilk and if he tolerates it, go with 1/2 and 1/2 for a while and keep bumping up the peptamin and decreasing the breastmilk. Our OT said that we also might see him "hungrier" or more willing to eat foods once he is all the way on Peptamin because Dr. Brady has orders for him to get 32 oz. per day (it is higher calories than breastmilk so he'll get less volume) whereas now he's getting around 37 oz/day. I also asked about weaning off the prevacid and reglan and she said that once he is eating food and we can pull the tube we will wean him off the meds. So, no time soon! He had OT today and since he did better than expected, we've upped his "homework" assignments. He now has to take 6 ML of babyfood 3X/day and continue offering the milk in a cup or peptamin JR in a cup. Sorry for all the details, just wanted to give you an idea of what he's doing these days! We go back to see her in mid-June.

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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.