My big medical update post for the week
This morning, they are conferencing on Teddy's heart. The medical team thinks that the reason his stats fell on Monday to the point where they couldn't take him off them ventilator is due to the aortic (previously truncal) valve that they repaired in surgery. Ideally, this would be left until he were older (well, ideally, it wouldn't have been truncus arteriosis at all). The valve was repaired, and the surgeon, at the time, said that it had a mild to moderate level of leakage. A person can tolerate a certain amount of leakage, but beyond a certain level, that becomes more problematic.
It's possible that the surgeon was wrong, and the leakage was more severe that it appeared in the controlled circumstances of the OR. It happens. It's also possible that the infection that Teddy came down with stressed his heart, and caused more leakage around the valve. If that's the case, it's almost a blessing that he got the infection. Otherwise, something else might have caused it after we took him home. It's possible that the medical team are wrong. They said to me that excessive leakage around the valve presents in the same way as several other things, like infections or excess fluid in the respiratory system. Finally, it's possible that it's a combination of things all going just a little bit less than optimally, that add up to a contribute to a whole that sucks more than the sum of it's parts. I'm not particularly bothered about whether some one is at fault here. I just want them to do their best to make him well.
In any case, the medical team is going to present to the surgical team that they need to look at this, and they'll kick around ideas about what to do. Hopefully, if they have to go back in, it could be done in the cath lab, like many valve replacement stuff is done. Amy will meet with them this afternoon to find out what they decided in the conference. As soon as I know what they decide, I'll let you all know what we find out. So where does that leave us? Well, we're definitely not going to have him home by Thanksgiving. He's still in the ICU right now. And we're waiting.
Now, to answer some questions that I imagine people may have and that I've gotten from people who I've already explained all this to.
What does "leakage" around the valve mean? Does this mean that he's bleeding internally?
It doesn't mean internal bleeding. Your heart's valves are like doors in your house. They're only supposed to open one way to keep the blood flowing in the same direction. In Teddy's case, the valve that used to be the truncal valve has 4 leaves on it. Normally there are 3 that meet like the Mercedes symbol. His 4 are like little sections of a circle. When 4 sections of a circle meet, if they don't completely overlap, there's a space in between them where some blood can go the wrong way. This makes his heart less efficient. You can see a picture that they gave us of his heart pre-surgery. The valve in question in the big circle in the middle there, and the leaking is that bit where the 4 semi-circular leaves don't quite meet.
The medical team's theory seems to be that since he seems to have trouble just when they take him off the vent or have weaned him down to the point where the vent isn't doing much of anything, the valve is too leaky when he has to have his cardiovascular system work harder.
Does this mean that when Teddy gets out, he's going to be weaker than you thought?
No. They're going to keep him and make sure that he gets to the point where he's a more or less normal, healthy, happy little guy. The surgical team didn't want to have to replace the valve because that means going in to revise that as well as the truncus repair that they did. This may mean more surgery, because they may not line up to be on the same schedule. It certainly means a surgery sooner than we might have hoped.
What can we do to help?
Unfortunately, not much right now. A typical day for us is that I go to work in the morning, and Amy goes to the hospital. In the evening, we meet for dinner, and to catch up. Then, I go back to the hospital while Amy rests. Then later, we meet back up and catch up again, and do whatever we need to do around the house to keep it up. This lets us have someone around him pretty often. It also lets us both get some rest, lets us manage our day to day lives, and keeps me from crawling out of my skin as I sit around the hospital all day feeling like I'm not accomplishing anything useful.
So right now, what you can do is hope and pray. You can call Amy or me in the afternoon or evening. Amy usually tries to get a nap in while I'm at the hospital, so if you want to call her to talk, I suggest the afternoon, before 5.
When is he coming home?
You tell me, then we'll both know. Ideally, if he has to go back to the OR, he'll be out of the ICU a week or 10 days after whatever they do, and then out of the hospital a week or so after that.I'm hoping that he's out before Christmas at this point. Sorry, but that's the best I can do.
It's possible that the surgeon was wrong, and the leakage was more severe that it appeared in the controlled circumstances of the OR. It happens. It's also possible that the infection that Teddy came down with stressed his heart, and caused more leakage around the valve. If that's the case, it's almost a blessing that he got the infection. Otherwise, something else might have caused it after we took him home. It's possible that the medical team are wrong. They said to me that excessive leakage around the valve presents in the same way as several other things, like infections or excess fluid in the respiratory system. Finally, it's possible that it's a combination of things all going just a little bit less than optimally, that add up to a contribute to a whole that sucks more than the sum of it's parts. I'm not particularly bothered about whether some one is at fault here. I just want them to do their best to make him well.
In any case, the medical team is going to present to the surgical team that they need to look at this, and they'll kick around ideas about what to do. Hopefully, if they have to go back in, it could be done in the cath lab, like many valve replacement stuff is done. Amy will meet with them this afternoon to find out what they decided in the conference. As soon as I know what they decide, I'll let you all know what we find out. So where does that leave us? Well, we're definitely not going to have him home by Thanksgiving. He's still in the ICU right now. And we're waiting.
Now, to answer some questions that I imagine people may have and that I've gotten from people who I've already explained all this to.
What does "leakage" around the valve mean? Does this mean that he's bleeding internally?
It doesn't mean internal bleeding. Your heart's valves are like doors in your house. They're only supposed to open one way to keep the blood flowing in the same direction. In Teddy's case, the valve that used to be the truncal valve has 4 leaves on it. Normally there are 3 that meet like the Mercedes symbol. His 4 are like little sections of a circle. When 4 sections of a circle meet, if they don't completely overlap, there's a space in between them where some blood can go the wrong way. This makes his heart less efficient. You can see a picture that they gave us of his heart pre-surgery. The valve in question in the big circle in the middle there, and the leaking is that bit where the 4 semi-circular leaves don't quite meet.The medical team's theory seems to be that since he seems to have trouble just when they take him off the vent or have weaned him down to the point where the vent isn't doing much of anything, the valve is too leaky when he has to have his cardiovascular system work harder.
Does this mean that when Teddy gets out, he's going to be weaker than you thought?
No. They're going to keep him and make sure that he gets to the point where he's a more or less normal, healthy, happy little guy. The surgical team didn't want to have to replace the valve because that means going in to revise that as well as the truncus repair that they did. This may mean more surgery, because they may not line up to be on the same schedule. It certainly means a surgery sooner than we might have hoped.
What can we do to help?
Unfortunately, not much right now. A typical day for us is that I go to work in the morning, and Amy goes to the hospital. In the evening, we meet for dinner, and to catch up. Then, I go back to the hospital while Amy rests. Then later, we meet back up and catch up again, and do whatever we need to do around the house to keep it up. This lets us have someone around him pretty often. It also lets us both get some rest, lets us manage our day to day lives, and keeps me from crawling out of my skin as I sit around the hospital all day feeling like I'm not accomplishing anything useful.
So right now, what you can do is hope and pray. You can call Amy or me in the afternoon or evening. Amy usually tries to get a nap in while I'm at the hospital, so if you want to call her to talk, I suggest the afternoon, before 5.
When is he coming home?
You tell me, then we'll both know. Ideally, if he has to go back to the OR, he'll be out of the ICU a week or 10 days after whatever they do, and then out of the hospital a week or so after that.I'm hoping that he's out before Christmas at this point. Sorry, but that's the best I can do.
Comments
Post a Comment