VCUG/DMSA Round Somethingorother

Wednesday, May 23, 2012

One of the reasons that May has been so crazy for us (and for my lack of posting) was that we were rapidly approaching another big day for Emma when it comes to her VUR. I pretty much just tried to put this day out of my mind for most of May, but the closer we got the most I couldn't shake the awful feeling of having to put my Emma Kathryn through another day like this.

I have to preface this by saying that we are INCREDIBLY lucky when it comes to our babies. So much so, that I can't even put into words how blessed we are. The babies are truly healthy and happy and I couldn't ask God for anything more in my life. It's pretty easy to slip into the "Whoa is me" mode, like I'm sure we did before Emma's VCUG/DMSA scan this year, but it sure didn't take long before being at one of the best hospitals in the country, to be reminded of how truly lucky we are.

It's been just about one year since Emma's last DMSA scan. The DMSA scan is a nuclear medicine test that provides a detailed picture not only of how the kidneys look, but how they are working. So during this test, they look for things like kidney scarring/damage as well as how hard both the kidneys are working. It seems like each year it gets harder and harder to put Emma through this as she gets older but its what she needs, so as her parents, that's what we are going to do. This year, was a doozy though. We have done both the VCUG and DMSA tests before, but never in the same day (the VCUG test is the test where you determine if the reflux is still present or not). Again, have to pause here and say how truly amazing the staff was at the hospital. It is incredibly hard to schedule these tests because there is a lot timing restrictions that go into it, and they made special arrangements just for us to keep from having to shuttle us back and forth between buildings (they are moving to a new children's center). Amazing.

First up was Emma's physical. Although she goes regularly to her pediatrician, she has to get a physical the morning of the tests to get the green light, mostly for the sedation portion. Emma did absolutely amazing during this part. Because of her VUR and what she has had to go through, Emma developed a big fear of doctors. So much so, that we couldn't even take her to the vet when we brought Shamie in, because she would freak out when the vet walked in with their white coat. But, we have been working through that and she was so brave when it came to getting everything done. All went really well until we had to get her IV to get the DMSA fluid started before we were rushed off to the VCUG test first.

Once the IV was in and her arm was all taped up against the board, we were off to the VCUG test which is certainly the worst of the two. This is the test that determines if she still has VUR or not. It basically consists of stripping her down (which is scary enough for a toddler), and stressing her bladder as much as possible by filling it through a catheter and taking x-ray images throughout the process. No sedation. Awful. I have never heard Emma scream like that in her life. She was so scared. She didn't understand. Wes and I had to help hold her down. We just wanted to rip her off that table and run. This was the first time we had gone through this procedure while she is potty trained, so trying to convince a toddler that has just been traumatized that she needs to pee on the table (after you just spent months telling her she can only pee on the potty) was pretty tough. Finally, she couldn't hold it anymore (and was complaining that her belly hurt) and she got some relief. Soon it was over (and I know there is a lot that I am missing, partly because I just don't want to relive that moment) and we got Emma dressed and settled and I have never been so proud of my baby girl. She was such a trooper. Probably more so than Mommy and Daddy.

We found out right then and there, she still has VUR. VCUG FAIL.

Not only does she still have it, but it's worse than we had originally thought. It's a Grade 2/3 which means the urine is backing up all the way into her kidneys. Ugh. During her first VCUG test, when she was just under one, we were told that she had Grade 1 VUR, maybe Grade 2. During that test, the little stinker kept peeing on the table as they were trying to fill up (stress) her bladder, so they never got it truly full. But they sure did this time.

I'm pretty sure Wes and I were devastated at this point. Again, not because this is life threatening, but because we just wanted this to be over for our baby. We were both convinced going into this day that it was gone. We wanted to be done with being worried that she has a bladder or kidney infection every time she gets a fever. We wanted to be done with catheters at the doctor's office every time she has a fever to check for UTIs. No more VCUG tests. No more DMSA scans. We just wanted it done for her. But, it was time to move on and deal with the path forward. 

At this point, although we were upset that she still had VUR, I felt slightly relieved. We still had several hours to go, but the next step was to have Emma sedated for the DMSA scan. At least she wouldn't be screaming. She wouldn't be in pain. We even tried to do the test without the sedation because my poor baby was so tired and wiped from the VCUG, that she just fell asleep in Daddy's arms. Unfortunately, she woke right up when we tried to move, so we had to go with the sedation. This time though, it went much smoother. She didn't fight it, she didn't thrash around, she just fell right back to sleep.

Then we sat. And sat.
And watched our baby girl as she slept on the table for an hour.
We giggled as she let out a toot here and there, and snorted a few times, but then just kept sleeping.

We watched as the giant camera, rotated around her, looking like it was filling her up with gas.
 It was such a big machine, for such a tiny baby.

What is so amazing about this, is that they time everything so perfectly, that the minute (and I mean the minute) the test was over, Emma was ready to wake up. I am so thankful that she came out of her sedation so well. She was certainly loopy and tired, but nothing like last year or the year before.

We then headed off to get some lunch in the cafeteria before our appointment with Emma's urologist. At this point, we were just happy to have the hard parts over with, and to have Emma doing so well. She ate a HUGE lunch (which she has done the previous two times as well) and we were off to our appointment.

Long story short, we met with the urologist for probably half hour after to discuss the results and path forward. We came to find out a day or two later, that there was a small amount of possible kidney scarring on her left kidney (the side where she has reflux) but the hospital had just switched to much more powerful cameras, so they were taking the position that it was always there (probably from her original bladder/kidney infection) but that they just couldn't see it before. We then went over what our options are for moving forward:
  • A) daily antibiotics (now that Emma still has VUR she gets kicked off the study she was part of) along with strict potty and eating rules
  • B) DEFLUX (injecting a bulking agent into the bladder wall around the opening of the ureter where reflux happens to stop the back flow of urine to the kidneys) or
  • C) surgery (sever the ureter from the bladder and then reattach it at a different angle so that urine can't back up).
After talking it over with a lot of different people (including her pediatrician that we 100% trust), we pretty much immediately ruled out the major surgery at this point. So far, she hasn't had a UTI since we first found out before she turned one. So to us, even though surgery is the only true fix, it's not justified at this point. Same for the DEFLUX. At this point, our decision is if we should keep Emma on the antibiotics, or try to manage it with just the strict eating and potty routines. I think for now, we are going to keep her on the medicine since the goal is to prevent long term kidney damage and at least give her the next year to try to grow out of this (there was a much higher chance she would grow out of this by the age of 3, but since that didn't happen, we are keeping our fingers crossed that she just needs another year).

So, here we are, with a new prescription for antibiotics and praying that when we repeat the awful VCUG in a year, that Emma will have outgrown VUR for good.  

Emma hasn't really spoken much about the day she got "pictures of her belly" taken, so I'm hoping that she doesn't even remember much of it. But she probably remembers the 1,576 treats that Mommy and Daddy gave her for the rest of the day to try to make up for it. :)

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