Last night, around 8pm, G and I each received a phone call. We both missed the call, but it was from a urologist we've never met. We have an appointment with him a month from now for a second opinion. He was calling to say that if we want, he'd be happy to talk to us over the phone. He had the little D's scans in front of him and that he'd hate for us to be waiting on him to move forward.
This morning, I still can't get over how nice this was. And how lucky we've been with all our doctors. Randomly, the other day, I called our pediatrician to update her on the little D's latest, and she called me back within 5 minutes. It's great -- typically, when I call her, we'll get patched through to HER. Not a nurse, not a help line. Her receptionist might take a message if she's in with a patient, but I can always expect a call back. Whether it's because D's burning up with a fever or just constipated. And on weekends, if it's an emergency, I'll call her directly on her cell. That's right, I got my daughter's pediatrician's private number on my speed dial.
Our urologist visited us in the hospital when we were admitted in March. When we discovered D's hip dysplasia last year, he was the one that took the x-rays over to the orthopedics department and arranged for us to see some one right away. Our orthopedic surgeon ran over from her clinic after D's surgery last year to catch us in the hospital parking lot before we took off. She had the results of D's MRI and wanted us to know that everything looked great. While the little D might be one of the unluckiest kids alive when it comes to her medical issues, we're incredibly fortunate to have an awesome team of doctors looking out for her.
Last week, we had a follow-up with our urologist. The little D got another VCUG scan, which entails an Incompetent Fellow (not always -- last year, we had an Awesome Doc who got to relay the bad news that our kid incidentally had a DISLOCATED RIGHT HIP, by the way) inserting a catheter through D's urethra, which is the tube that carries the urine from the bladder out of the body. The bladder is filled with contrast material, and they wait for the little D to pee. During the process, x-ray images show where and how the urine is flowing. It's how we diagnosed D's reflux last year, and we were looking to see if there was any improvement in the severity of the reflux since.
Afterwards, we went through what was probably the longest ultrasound ever. Overall, I'd say it was one of our calmer hospital visits. The little D cried through the VCUG (and it took a while before she peed, so the wait was a bit excruciating). But she let us entertain us during the ultrasound with the TV and a book with animal pics. I think the ultrasound tech was especially enchanted by her pronunciation of kangaroo ("na-na-noo"). And she happily left the appointment with a free car toy as a reward for her patience. During the actual visit with the urologist, she gleefully squealed "idney" every chace she got (i.e., kidney). I'm not sure how much our urologist enjoyed talking over the squealing, but I'd call the appointment an overall success.
The bad news: absolutely no improvement in her reflux, so we're heading to surgery. And to make matters even more interesting, our doc thinks there's something else going on with the little D's insides. He thinks, based on something he saw in the VCUG scan, that our kid has what's called a duplicated system. Most of us have one tube (ureter) going from each kidney down to our bladder (so total of 2, one on each side). He thinks she has 2 on each sides, going to a different part of each kidney. So her kidneys have almost 2 separate sections to them. I guess it's not that unusual. Some people have this and never know so long as things are working properly. But in her case, one or both tubes is refluxing, hence the issue. During surgery, the doc will open her up and move both sets of tubes to a non-refluxing procedure. In most cases, they don't remove the extra tube, just leave them both there. It's an abnormality that she'll just live with. Once they fix the reflux, it shouldn't really matter. But it does make the surgery a bit more complicated. And he can't verify that this is actually what's going on until just before surgery when he'll insert a scope up there to see. I guess the VCUG isn't really the scan to see this type of structural anamoly, he was just deducing based on the angle of something or another. He showed us, and to him, it seemed perfectly clear. Heh, this is why he's getting paid the big bucks.
So yah, good times. While we like and trust our urologist, we asked for a second opinion just to have another set of eyes go over our kid's scans. Our ped has been going on and on for some time now about having a different doc at the clinic look over our daughter's history, just to make sure nothing is missed. Apparently this doc is a bit of a wunderkind, who can see things that other docs can't. She'd actually referred us to him to begin with, but he was on sabbatical at the time, so the clinic had set us up with our younger, less-experienced doc. Since then, she's mentioned him anytime something big's come up (like when we found out D had had a kidney infection for probably months back in March). "Next time," our ped groused, "I'm calling Dr. K directly. This is ridiculous. He'll know what to do." etc., etc.
So, our call last night? The illustrious Dr. K himself. :) We scheduled our 2nd opinion appointment but his first opening wasn't for another month. In the meantime, I've been working with the scheduler for our doc to set up a surgery time. I thought we'd get that on the books (since I doubt we're going to get a drastically different opinion from the 2nd doc). And ideally, we wanted to do it in mid-June, so I want to make sure we get a slot. Well, it turns out that our urologist has some openings this month but then nothing again until the end of July/early Aug. The scheduler actually called us at first to see if we wanted to go in for surgery TODAY. Um, no. Even if we were ready, how can we with our second opinion not scheduled until next month?
Anyway, hence our surprise phone calls last night. I'm not sure if the scheduler happened to mention our dilemma . . . she said he happened to be walking past the other day while we were talking on the phone. Or maybe our urologist said something. I don't know. But still, suddenly, there he was, offering to go over everything earlier so that we're not waiting on him for a surgery time. I think this means that his opinion is also that we need surgery and that he doesn't want us to wait. But still, it's nice, right?
Lately, I haven't always handled the hits as well as I probably can. It's been frustrating to watch our kid go through one thing after the next. But the one thing I am glad for is that we have such amazing doctors, who have all been so committed to making sure nothing falls through the cracks. I'm part of various support groups for parents of kids with hip and kidney disorders. From what I've read, this isn't always a given, so we got that going for us at least.
This morning, I still can't get over how nice this was. And how lucky we've been with all our doctors. Randomly, the other day, I called our pediatrician to update her on the little D's latest, and she called me back within 5 minutes. It's great -- typically, when I call her, we'll get patched through to HER. Not a nurse, not a help line. Her receptionist might take a message if she's in with a patient, but I can always expect a call back. Whether it's because D's burning up with a fever or just constipated. And on weekends, if it's an emergency, I'll call her directly on her cell. That's right, I got my daughter's pediatrician's private number on my speed dial.
Our urologist visited us in the hospital when we were admitted in March. When we discovered D's hip dysplasia last year, he was the one that took the x-rays over to the orthopedics department and arranged for us to see some one right away. Our orthopedic surgeon ran over from her clinic after D's surgery last year to catch us in the hospital parking lot before we took off. She had the results of D's MRI and wanted us to know that everything looked great. While the little D might be one of the unluckiest kids alive when it comes to her medical issues, we're incredibly fortunate to have an awesome team of doctors looking out for her.
Last week, we had a follow-up with our urologist. The little D got another VCUG scan, which entails an Incompetent Fellow (not always -- last year, we had an Awesome Doc who got to relay the bad news that our kid incidentally had a DISLOCATED RIGHT HIP, by the way) inserting a catheter through D's urethra, which is the tube that carries the urine from the bladder out of the body. The bladder is filled with contrast material, and they wait for the little D to pee. During the process, x-ray images show where and how the urine is flowing. It's how we diagnosed D's reflux last year, and we were looking to see if there was any improvement in the severity of the reflux since.
Afterwards, we went through what was probably the longest ultrasound ever. Overall, I'd say it was one of our calmer hospital visits. The little D cried through the VCUG (and it took a while before she peed, so the wait was a bit excruciating). But she let us entertain us during the ultrasound with the TV and a book with animal pics. I think the ultrasound tech was especially enchanted by her pronunciation of kangaroo ("na-na-noo"). And she happily left the appointment with a free car toy as a reward for her patience. During the actual visit with the urologist, she gleefully squealed "idney" every chace she got (i.e., kidney). I'm not sure how much our urologist enjoyed talking over the squealing, but I'd call the appointment an overall success.
The bad news: absolutely no improvement in her reflux, so we're heading to surgery. And to make matters even more interesting, our doc thinks there's something else going on with the little D's insides. He thinks, based on something he saw in the VCUG scan, that our kid has what's called a duplicated system. Most of us have one tube (ureter) going from each kidney down to our bladder (so total of 2, one on each side). He thinks she has 2 on each sides, going to a different part of each kidney. So her kidneys have almost 2 separate sections to them. I guess it's not that unusual. Some people have this and never know so long as things are working properly. But in her case, one or both tubes is refluxing, hence the issue. During surgery, the doc will open her up and move both sets of tubes to a non-refluxing procedure. In most cases, they don't remove the extra tube, just leave them both there. It's an abnormality that she'll just live with. Once they fix the reflux, it shouldn't really matter. But it does make the surgery a bit more complicated. And he can't verify that this is actually what's going on until just before surgery when he'll insert a scope up there to see. I guess the VCUG isn't really the scan to see this type of structural anamoly, he was just deducing based on the angle of something or another. He showed us, and to him, it seemed perfectly clear. Heh, this is why he's getting paid the big bucks.
So yah, good times. While we like and trust our urologist, we asked for a second opinion just to have another set of eyes go over our kid's scans. Our ped has been going on and on for some time now about having a different doc at the clinic look over our daughter's history, just to make sure nothing is missed. Apparently this doc is a bit of a wunderkind, who can see things that other docs can't. She'd actually referred us to him to begin with, but he was on sabbatical at the time, so the clinic had set us up with our younger, less-experienced doc. Since then, she's mentioned him anytime something big's come up (like when we found out D had had a kidney infection for probably months back in March). "Next time," our ped groused, "I'm calling Dr. K directly. This is ridiculous. He'll know what to do." etc., etc.
So, our call last night? The illustrious Dr. K himself. :) We scheduled our 2nd opinion appointment but his first opening wasn't for another month. In the meantime, I've been working with the scheduler for our doc to set up a surgery time. I thought we'd get that on the books (since I doubt we're going to get a drastically different opinion from the 2nd doc). And ideally, we wanted to do it in mid-June, so I want to make sure we get a slot. Well, it turns out that our urologist has some openings this month but then nothing again until the end of July/early Aug. The scheduler actually called us at first to see if we wanted to go in for surgery TODAY. Um, no. Even if we were ready, how can we with our second opinion not scheduled until next month?
Anyway, hence our surprise phone calls last night. I'm not sure if the scheduler happened to mention our dilemma . . . she said he happened to be walking past the other day while we were talking on the phone. Or maybe our urologist said something. I don't know. But still, suddenly, there he was, offering to go over everything earlier so that we're not waiting on him for a surgery time. I think this means that his opinion is also that we need surgery and that he doesn't want us to wait. But still, it's nice, right?
Lately, I haven't always handled the hits as well as I probably can. It's been frustrating to watch our kid go through one thing after the next. But the one thing I am glad for is that we have such amazing doctors, who have all been so committed to making sure nothing falls through the cracks. I'm part of various support groups for parents of kids with hip and kidney disorders. From what I've read, this isn't always a given, so we got that going for us at least.
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