Care4Conway: Finally Home!

Monday, June 29, 2009

Finally Home!

The visit with the pediatrician went well. It was pretty much just so they could update their info with current meds, etc.

We left our house at 1:45 for Connie's 2:30 cardiology appt. and we JUST GOT HOME (at 6:45!). We had lots to go over with Dr. Bromberg and we left his office at 4:20 and headed to the outpatient pharmacy to pick up two scripts. Dr. Bromberg changed his concentration on the amiodarone and also wrote a new enalapril script since the old one had no refills left anyway and was for too low of a dose. We spent two hours at the pharmacy because #1 it takes a long time to get compounds made and #2 insurance decided to be fruit about the whole thing and deny coverage. After jumping through hoops, we were able to get out of there with the amiodarone but only got two days worth of enalapril. We'll get the rest after they battle it out a little longer.

The actual visit went well. He's not in flutter and he'd not had any high atrial rates. His INR was a little high at a 3 so we are cutting him back to 1/2 mg of coumadin on M, W and F and 1 mg on T, R, Sa and Su. We will go back to check the INR again on Monday and also get a dig level. Then we'll see Dr. Bromberg again in a month. At that time he will do a chest x-ray, echo, etc. and a complete workup. He'll also recheck the thyroid levels. After that, if he stays out of flutter we will be seen six months later and hopefully be able to assess where we are with the valves. The hope is that his LV function will be totally back to where it was by then. I brought up to him the phone call I got from the insurance company last week asking me if we've been talked to yet about heart transplant! I asked him if that was on the horizon or something. He was in shock that they would call and ask about that. He said, "That was the whole point of the double switch! We might be talking about that now had he not had it, but as long as his LV function is good, that is not on the list of things to do." That helped me breathe easier. He said that our goal is to not have to do anything with the valves until they go back in to replace the conduit and hopefully, valve repair would be possible, rather than replacement. He just doesn't want to even think about the need for mechanical valves at this point and the whole host of new issues that would bring. He also said that he is pretty sure that in six months, if we have not had any more flutter, that he'd be able to cut Connie's amiodarone dose down some as he feels that Connie is pretty sensitive to the drug.

I guess that's all for now. Connie's getting ready for a swim and was such a good boy on his long day of visits. He got a little restless a few times, but granola bars and iPods did the trick.

Thanks for checking in and thanks for the prayers today and everyday!

1 comment:

Shari said...: I am so thankful things went well. I continue to pray for Conway! He is such a sweet boy!; June 29, 2009 at 8:12 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.