So I thought I'd post how Christopher's appointment went before I forget everything that was said. Dr. Chang was very pleased with his growth, color, and sound ( meaning his cry). He can tell a lot about the function of the heart just by these three things. If he's not growing ...obvious problems. If his color is more bluish than it should be, then he's sating too low, (not enough oxygen). If he cries loudly, it means good lung function, which means "good" heart function. Dr. Chang was also happy with the ultra sound. Christopher's pressure, and rhythm are all good. He is happy with the shunts function, and the band they put on it.
The one negative to all that we heard is that Christopher's tricuspid valve is leaking moderately. This is the valve between the right atrium and the right ventricle. The leakage is do to pressure load, and volume load. I will try my best to explain. Right now all of the blood from the body and all the blood from the lungs is dumping and mixing in Christopher's right atrium. (This is how it has to be plumbed to work.) That is a lot of blood for one chamber when it was meant for two. The valve has always leaked since his first surgery. There is no way around it. But it is getting slightly worse. The ways to remedy this leakage is to up his medication. But that will only do so much, for so long. The other way to minimize the leakage is the Glenn procedure with is the second heart surgery. In this surgery, 1/2 of the blood that is being directed to the right atrium is redirected. This takes a substantial amount of workload off the heart. Dr. Chang will keep an eye on the leak. We may just have to go to surgery sooner than later. And the surgeons would prefer to do it later just for the size factor.
Dr. La Gras is Christopher's Cardiologist in regards to his pacemaker. Now for a little bit of history. We were originally told that it is very common for kids coming out of surgery to have an external pacemaker as the heart is being completely rerouted and is severely swollen. Then we were told that it was common to have arrhythmia (irregular or skipped beats) for a day or two. Then a couple of weeks went by and we were told that he had total heart block ( his atrium and ventricle weren't "speaking" to each other and probably never would), but that the cardiologist were going to give him a couple more days before giving him a permanent pacer. The next two days he went from total heart block, to third degree (every third beat he would do himself) to second degree heart block (every other beat is himself). He couldn't sustain a heart rate over 90 however, and it was determined that he would need the permanent pace maker even though he had mad progress. Once he had the pacemaker in he went from pacing 50% of the time to pacing 100% of the time, meaning he wasn't pumping his heart himself whatsoever.
When we talked to Dr. Chang on Friday, he said that he would probably be pacemaker dependent for life.
We then went in to talk to Dr. La Gras. In two weeks Christopher has gone from pacing 100% to sensing 85%! Which we were told can't happen or is very unlikely. He is pumping is own little heart 85% of the time. Dr. La Gras explained that he will always have a pace maker, but that it was extremely good that he had recovered so much of his own conductivity. He change the mode on the pace maker to pause just a little bit before it sends a charge, to kind of wait and see if his own charge will kick in. He also said that in a month when he checks back in, there is a good chance that he'll be sensing 100% which means they will change the mode to back up mode. Back up will only send a charge when he forgets to send a charge which at that point may only be once or twice a day. This greatly increases the life of the pacemaker. When he used it 100% he would've had to get a replacement in 5 years. Now he may not need one for 15 years!!!!!
I asked Dr. La Gras, since Christopher will have a pacemaker for life, how important is it really, whether he or the pacemaker sends the charge. He explained it like this: The heart should contract all at the same time. When you're on a pacemaker there's a slight delay when the pacemaker sends the charge. It is much better for the heart to be fluid and charges sent in harmony. So we are excited to find that he is doing much of the work on his own!
I am looking for a good link that I like that explains all 3 surgeries. I am not the best at explaining things.
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