So, we had her cardiology appointment today. I definitely feel better about my understanding of everything now. As far as her lung surgery goes, there is definite promise that it will greatly improve her life. Once she isn’t working so hard to breathe, she should be more comfortable in general, she should sweat a lot less, she should be able to start to gain some real weight and with any luck, we should be able to get her off the O2! So, we are certainly excited about all of those things.
I still haven’t heard from the surgeon, and I think he is leaving tomorrow for vacation for 2 weeks.
Now, as far as her heart goes… I understand what the argument is there. In the most basic terms, the group wants her to have a procedure called the Damus. Her surgeon does not want to do this. He feels that it is his experience that when this is done, it causes valves to leak and you end up right back where you started, but with a more scarred heart. Makes sense to me. And it means no extra heart surgery, at least for now anyway. So, I’m fine with that. Plus, we can do this lung surgery and give her some time to heal and gain some weight, and then do more testing to see how things are functioning. I think it is possible that the relief of the lung pressure could help the heart. The idea is that he’s going to have to go back in there in the next year anyway, and that surgery might take care of it as well.
One new development… I mentioned to her cardiologist that since we left the hospital two weeks ago, her heart rate has been continuously low. We knew she had heart block (which is why they installed the pacemaker wires when she was just 4 days old), but so far, it hasn’t been that much of an issue, so they haven’t hooked it up to a battery yet. Anyway, I was thinking that the monitor we have just couldn’t keep up with the heart block, so it was showing 50 beats per minute, when in reality it was more. So, he felt her pulse and thought the monitor was correct. So, they put a Holter monitor on her to record her heart rhythms. I will turn the device in tomorrow for them to analyze. Her doctor said that if her heart rate is actually that low, they will need to hook up her pacemaker asap. Well, that’s about it for tonight.
Monument Avenue 10K!
2 weeks ago