So Now We Know

Just a quick update for those of you who are interested. I met with the cardiologist yesterday and our little guy is being put forth for surgery for sure. We knew it was coming, but I keep hoping that one of these times I'll show up at the doctor's office and they'll tell me that everything has miraculously fixed itself and that we can go home and never worry about this again. So far, no luck. But I'm surprisingly optimistic about everything, and have been told by everyone who knows anything about the surgeons/hospital where he will have his surgery that it is a wonderful hospital with amazing doctors, etc. etc. So I'm hoping they're right. For those of you who would like to know, there are four things that are wrong with Tony P's heart, and they are going to try to fix all four of them. Here's a list:

• Mitral valve (AKA Mitral stenosis): Instead of trying to replace it, our doctor is going to recommend that they try to open it up surgically and hope for the best. If they replaced the valve, they would have to go in and replace it again every 5 years, so we really hope they don't have to do that. By fixing some of the other problems, they're hoping that the narrowed mitral valve will be fine to just leave alone
  
• VSD (AKA the hole): They will close this, hopefully with only a few stitches on the heart itself. It is a good sized hole (which in heart terms means big, I guess), so they're going to close it to eliminate the flow of blood from one side of his heart to the other
• PDA (this is the ductis that never closed after he was born and it should have): This will be closed off completely to stop the additional flow of blood
• Coarctation (narrowed aortic arch): We're not sure what the surgical team will decide to do about this. Right now our doc is thinking they could leave it, as it is a mild narrowing, but they also may decide to fix it while they're in there anyway

So this will require open-heart surgery, for sure, which is what I was hoping they would tell me they wouldn't have to do. The procedure will take at least 6 hours, and we will plan to stay in the hospital for approximately 7-10 days. He said it will probably happen within a 4 month period, so we're hoping for summer time, but if they called me tomorrow and said he needed to go in, I would drop everything and go.

In relation to all of this heart stuff, Tony P. will also be having some genetic testing done. I'm still not totally clear on why they perform all of this testing, but as best I can figure out, it's to determine where this heart problem (if anywhere) has come from. There is a chance that he may have a chromosomal abnormality which would have caused this particular combination of problems, but that won't be determined until after we have the testing. So if you're closely related to either me or my husband, and you know of some family history of heart disease, would you please let me know? I'm supposed to bring in as much information as I can gather about his family health history, so anything you might know would be greatly appreciated. If you don't want to write it on the blog, feel free to email me with any information. Thanks.

I'm kind of annoying myself with this constant medical jargon, and wish for something else to be occupying my thoughts that I could write about. Unfortunately, this seems to be the number one thing on my mind these days. I will say that having a place to be able to write this stuff down not only works as a journal for me, but also is an easy way for me to tell people what's going on, without having to explain it all in detail. I have found myself on several occasions telling people to "just read the blog" if they want more information. I apologize if that sounds rude, but I find that I'm much more detailed and coherent in written form than when I actually try to explain it in person. I'm also very aware of the fact that we still have a healthy, very active little boy, and I am so grateful for that. I have been perusing other people's blogs who have children with heart disease, and I feel very lucky that we have, to this point, only dealt with a few episodes of having a very sick little boy. I realize that compared to lots of other children out there, our problems are minor, and may seem in comparison to be inconsequential. In this way I feel somewhat silly going on and on about this. However, I am also aware that we have loved ones who are reading this, and who are very concerned about our little boy, are praying for him, and are praying for us. That is the reason why I continue to update this blog and write about him. So that all of you who know us personally and know how important he is to our lives will know how he is doing, and how much we appreciate all of your continued support. So thank you.

And also thanks for these...



Nothing quite like a good Snickers bar to get a girl through a crisis...