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!