So . . . our urologist stopped by for a bit yesterday. He didn't really have a lot of answers. He doesn't know why D's urine tests and cultures always came back negative. But from looking at the scans, he is sure that it's a kidney infection. No doubt about that now, it seems. And it's not something worse, so phew. Apparently, the other thing that can happen is that little abscesses can form. These are little pockets of infection that are incredibly hard to treat. Our kid would be in the OR already if she had one. So that's good at least.
Also a good thing is that everyone's sure now of what it is. Treating it should be relatively easy. She gets IV antibiotics. We'll be discharged when she's fever free and doing well, and will then be given a course of oral antibiotics at home. After that, we'll be changing the daily preventative antibiotic that D has been taking now. She's taken them for the last year to prevent infection and clearly they're not working.
The good news stops there. What our urologist also doesn't know is how much damage her kidneys may have already sustained from her infections. Particularly since this last one was around for potentially a month and a half before they caught it. And we probably won't know that answer for a while. So far, D's renal function studies are normal which is a good sign. But I guess kidneys can scar after an infection, so we'll have to wait and see how her body handles this one.
But here's the thing. She can't have another one. So this reflux condition that would one day just go away on its own just became a lot more serious. As long as her urine refluxes backwards, she will be susceptible to infections. And that's just not allowed. If even one (and now two) are worrisome there's no way she can have a third. Especially with them being SO hard to diagnose too. If we have to run a CT scan every time she has a fever, it's going to be a long four or five years (about how long they thought it would be before her reflux was completely resolved).
So our doc thinks we need to operate. This was always in the cards if her condition didn't improve eventually, but he was always confident that it would improve. So it wasn't an option that kept us up at night or anything. But now, well, it'll probably keep us up at night. There are two different operations they can do. One is a simple outpatient procedure. Our urologist will simply place a block in the tubes to keep the urine from getting to the kidneys. The problem with this technique is that it has a not-so-great success rate for the long term. The blocks get eroded and urine leaks through. It's fine for a child who has a less severe reflux, or for a kid who hasn't already had two pretty nasty infections.
Which means we'll probably be looking at the 2nd option: a fairly extensive open surgery that involves them taking out the tubes completely and repositioning them somewhere else where they won't reflux. It'd be a big deal. but the success rate is almost 100%. So my guess is that we'll be going this route, but I'm not happy about it. We'll see . . . no decisions are going to be made until the little D is completely well. In a few weeks, assuming her fevers are completely gone, we'll go back in to get a picture of her reflux. The last time we did this was over a year ago. We were scheduled to do this again this summer. It's kind of a painful test and our urologist didn't want to keep subjecting our kid to it when changes aren't likely to happen that quickly. So we'll move that up a bit and see if her reflux has improved at all over the last year. And then we'll have sit down and see what we want to do. But our doc has pretty much told us that unless the reflux has disappeared completely (which it clearly hasn't since she has a kidney infection), he will probably recommend operating.
In the meantime, of course, we still don't know what we're looking at in the way of past damage. All we can do is prevent anything more from happening in the future. So. . . fun times.
Also a good thing is that everyone's sure now of what it is. Treating it should be relatively easy. She gets IV antibiotics. We'll be discharged when she's fever free and doing well, and will then be given a course of oral antibiotics at home. After that, we'll be changing the daily preventative antibiotic that D has been taking now. She's taken them for the last year to prevent infection and clearly they're not working.
The good news stops there. What our urologist also doesn't know is how much damage her kidneys may have already sustained from her infections. Particularly since this last one was around for potentially a month and a half before they caught it. And we probably won't know that answer for a while. So far, D's renal function studies are normal which is a good sign. But I guess kidneys can scar after an infection, so we'll have to wait and see how her body handles this one.
But here's the thing. She can't have another one. So this reflux condition that would one day just go away on its own just became a lot more serious. As long as her urine refluxes backwards, she will be susceptible to infections. And that's just not allowed. If even one (and now two) are worrisome there's no way she can have a third. Especially with them being SO hard to diagnose too. If we have to run a CT scan every time she has a fever, it's going to be a long four or five years (about how long they thought it would be before her reflux was completely resolved).
So our doc thinks we need to operate. This was always in the cards if her condition didn't improve eventually, but he was always confident that it would improve. So it wasn't an option that kept us up at night or anything. But now, well, it'll probably keep us up at night. There are two different operations they can do. One is a simple outpatient procedure. Our urologist will simply place a block in the tubes to keep the urine from getting to the kidneys. The problem with this technique is that it has a not-so-great success rate for the long term. The blocks get eroded and urine leaks through. It's fine for a child who has a less severe reflux, or for a kid who hasn't already had two pretty nasty infections.
Which means we'll probably be looking at the 2nd option: a fairly extensive open surgery that involves them taking out the tubes completely and repositioning them somewhere else where they won't reflux. It'd be a big deal. but the success rate is almost 100%. So my guess is that we'll be going this route, but I'm not happy about it. We'll see . . . no decisions are going to be made until the little D is completely well. In a few weeks, assuming her fevers are completely gone, we'll go back in to get a picture of her reflux. The last time we did this was over a year ago. We were scheduled to do this again this summer. It's kind of a painful test and our urologist didn't want to keep subjecting our kid to it when changes aren't likely to happen that quickly. So we'll move that up a bit and see if her reflux has improved at all over the last year. And then we'll have sit down and see what we want to do. But our doc has pretty much told us that unless the reflux has disappeared completely (which it clearly hasn't since she has a kidney infection), he will probably recommend operating.
In the meantime, of course, we still don't know what we're looking at in the way of past damage. All we can do is prevent anything more from happening in the future. So. . . fun times.
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