Care4Conway: 3/16/08

Monday, March 17, 2008

Cardiology Update

Happy St. Patrick's Day to ya! Our little Irish prince went to see his cardiologist this morning. His last check up was exactly three months ago. At today's appointment they did his vitals and we recapped what meds he's on, what he's doing activity-wise and what kind of symptoms we are seeing at home. He's doing great. Blood pressure was a little elevated but the nurse said it was fine. His weight is 22 pounds, 8.8 ounces. Then they did his echo. It took three of us to keep him entertained. It seems as though our little TV loving boy wasn't the least bit interested in watching the Mr. Rogers episode playing on the wall. He wanted to grab and explore the equipment. His hands were full of ultrasound gel--yuck! One tech kept running out to get new toys (the noisier the better) for him to play with. The thing that worked best was my cell phone. He also enjoyed the bubbles and the light wand. The news from the echo was that the pressure in the right ventricle is about the same as it was after the surgery, about 50%. Normal pressure is 25%. When the pressure gets to be 2/3 (66%) of what it is in the left ventricle, then it is time to intervene (surgically or otherwise). Thankfully, we are not at that point and don't seem like we're heading to that point. Also, his left ventricle function is still great. This means that his ventricle is handling the severe leak in his aortic valve very well for now. Dr. Bromberg was very encouraged by this and said he was "a lot more hopeful about the prognosis" than he was after our last visit in December. The leak is not any better (we didn't expect it would be) but it's not any worse and he's asymptomatic for now so that is the best news. He said he can see him possibly making it five years before needing a new valve and he's really hoping that Dr. Bove could just repair that valve rather than replacing it. What wasn't very clear on the echo were the branch pulmonary arteries. They know there is some stenosis (which is why he has high pressures in the right ventricle), based on the cath he had in Michigan last September. The question is, how much stenosis (i.e. blockage/narrowing)? To find this out, they will do another cardiac catheterization next month. It will be done at Children's in St. Louis by Dr. Balzer. Dr. Bromberg will call him and tell him about Connie and specifically what we are looking for and some background on what's happened so far. This cath should let them see what the echo can't and get some more measurements on the pressures in the ventricles. If necessary, they will balloon open some of the narrowing, but Dr. Bromberg doesn't even think that would be necessary. He says that if we are the first case of the day, we may get to be outpatient. If he's not the first case, or if they have to do anything while they are in there, he will stay admitted overnight. Even though I had a good idea this was coming I am already dreading it. All those feelings seem to be rushing back and the thoughts of, "Will they find something and want to do surgery?" Praise God that as far as we know at this time, his heart is doing well and is handling the switch okay. His medications were changed a bit. We are going to try him completely off lasix. That means he is on NO MORE DIURETICS!! He's been on them since he was one month old. This is great news!! I'm glad because hopefully he can stay off them--at least until we're done potty training down the road. I can't imagine a kid learning to potty train while on diuretics! His Enalapril (blood pressure med) has been raised from 1.5 mL 2X/day to 2 mL 2X/day. We are bumping him up slowly until he gets to the max dose for his age/size. Dr. says that the more the better. We want to help that left ventricle as much as possible to maintain good function from the leak.

So, now we wait to hear our date from Children's on when the cath will be. We'll let you know when we find out.

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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.