DMSA Scan #2 Done!

Friday, May 27, 2011

With a little help from Mickey Mouse and Pink Bear, we successfully made it through Emma's second DMSA scan!

We have had several questions about why we needed this test or if Emma still has VUR so here's the rundown. The DMSA scan doesn't tell us is Emma still has VUR or really have anything to do with the VUR itself. It's simply a nuclear medicine test that provides a detailed picture not only of how the kidneys look, but how they are working. So they look for things like kidney scarring/damage as well as how hard both the kidneys are working. In cases where children have reflux only on one side (like Emma), you would expect that one kidney would be working a little harder than the one on the side with the reflux. They measure that part of the test on a scale of 0 - 100 where you actually want the results to be 50 - 50, meaning each kidney is doing exactly 50% of the work. Any numbers between 40 - 60 are good. During Emma's 1st DMSA scan, she measured at exactly 50 - 50, which the nurse said she hadn't seen in her 15 years of working in pediatric urology. My little overachiever. Ha!

So back to the point...the only test that will tell us if Emma still has VUR, is a VCUG test, which we will have again in a year. During the DMSA scan, they inject Dimercapto Succinic Acid through the IV and it goes directly to the kidneys but only stays radioactive for a few hours up to a day. Then you have to lay perfectly still (ergo the sedation for a toddler) and use a special camera to perform three different scans and hopefully diagnose any problems at their earliest stages. Even though Emma hasn't had any UTIs since her first one (which was before her first scan), that doesn't mean that there couldn't be some impact to her kidneys, so we still had to do the test.

Emma actually did really well that morning despite only being able to have clear liquids until 10:00AM, then nothing after that. I was nervous at first since she woke up asking for lunch, but she was a trooper. We left the house at about 10:30AM and she fell asleep in the car pretty quickly. Usually, Emma's "Pink Bear" doesn't leave her crib, but she has a special connection with Pink Bear, so we brought him along as well since we knew it would be a tough day. Emma has been naming all of her stuffed animals lately so the house is filled with stuffed animals named chocolate, Charlie, etc...but she refuses to give Pink Bear another name. If you ask her what the name of her bear is, she says "Pink Bear". :)
Because of all the tests that Emma has been put through at the doctors in her almost two short years (any fever at all means a catheter at the doctors) she has a big fear of anything related to the doctors. She even freaks out when we take Shamus to the vet because she knows its some kind of doctor. So yesterday was tough from start to finish even with the little things like getting blood pressure, or taking her temperature, or getting her weight, etc. But the nurses were amazing and in between "stuff" they let her play (and play with stuff she probably wasn't supposed to haha). So here she is "working", just like Mommy and Daddy. So we at least at some short parts of the day when Emma wasn't in tears. This was one of those times, and during our two short bus rides to go see her Pediatric Urologist.
Then came the not-so-fun stuff. Emma is just like Mommy in the sense that she HATES anything on her toes. So it was quite the challenge to put the blood-oxygen monitor on her toe, but that was a piece of cake compared to the IV. In order to the get the IV, they had to strap her down, tape a board to the back of her left hand and then put the IV in. This was one of the hardest two parts of the day. She was screaming. It took about three nurses to handle it, so there was pretty much only room for Mommy to try to calm her down. This is where Pink Bear came into play. Everything that Emma got, Pink Bear got first. It's hard to tell, but Pink Bear has some tape on his toe, just like Emma. He also got some pink tape like Emma, and even got his left paw taped to the little board like Emma did too. That helped a little at first...that's when Mickey came to help.

Emma LOVES Mickey Mouse. She especially loves the Mickey Mouse Clubhouse show on the Disney Channel and she watches it every morning, and pretty much every night before bedtime. On her favorite episode, Mickey and Pete fly up to the clouds to where the giant lives and they need to get Mickey's hot air balloon back. When they get to the giant's house, Pete gets scared, but Mickey helps Pete by telling him how brave he is. So that's what we did.The conversation went a little something like this...

Emma:  ::: screaming for Mommy :::

Mommy: "Emma....listen. Listen to Mommy. Can you hear Mommy?"

Emma:  ::: sniffle sniffle ::: "Yeah....(sniffle)....okay."

Mommy: "Do you remember when Mickey and Pete flew up to the sky to go meet the giant?"

Emma: ::: sniffle sniffle ::: "Yeah....(sniffle)....scared."

Mommy: "That's right, Pete was scared wasn't he? Just like Emma is a little bit scared too right?"

Emma: ::: scream :::: "yeah....lil' bit scared"

Mommy: "But it's okay right, because Emma is brave just like Mickey and Pete!"

Emma: "Mickey, brave. Emma, brave."

Mommy: ::: melts :::

So after that conversation, and a good 10 minutes of her screaming from being strapped down, I was able to pick up my hot, sweaty, tear-filled baby and calm her down in my lap. Just as she got calmed down, the doctor came in to do a small physical to make sure we were okay to use sedation. Poor Emma got so upset again. Then came another doctor to put in the Dimercapto Succinic Acid through the IV which Emma did not appreciated. She got her whole arm wrapped up (she looked like she had a broken hand) and luckily we were off for a little while to go see her pediatric urologist which helped bring my baby back to normal for a bit. We had to take a short shuttle ride but Emma loved every minute of it. Despite being her nap time, with no food or water for hours, she was actually in really good spirits. She also started to talk to Mommy about Mickey and Pete and Emma being brave on the bus too.

During our quick visit with the urologist, we unfortunately found out that next year may be even worse. Emma will go through the same VCUG and DMSA tests, but on the same day, back to back. So instead of it being like a 5 hour day, it will be more like an 8 or 9 hour day. But we are trying not to worry about that until the time comes.  

Soon enough, it was back on the bus headed to finally get to the actual DMSA scan. The scan needs to happen at just about 90 minutes after receiving the acid so after a quick wait in the waiting room, we headed back to start the sedation. Emma got pretty upset again because they tried to take her blood pressure and blood-oxygen levels again. On top of that, they hooked her up and began the sedation. It took about 15 or 20 minutes to really get her "out" and the last 5 were pretty tough because she was fighting in as hard as she could. I was holding her, and it was like holding a 22.4 lb newborn with a giant head that they can't hold up themselves yet. She was squirming and thrashing and hitting all at the same time as her head was flying back and forth. She finally gave in a little and rested on Mommy's shoulder while naming all of Mickey's friends on the nurse's scrubs. Then she was out.

Emma was then strapped into the machine (whatever that monster is called) and her hands were brought up above her head so they wouldn't interfere with the scan. It took another couple of minutes to get her in the right position and then off we were. It seems like a funny time to take pictures, but I almost didn't know what else to do with myself, so it was a good distraction and it was just on my phone. Then they start to run three different tests. One takes about 30 minutes, and the other two take about 10 minutes each. So we then sat in silence for the next hour, watching this machine rotate around our poor baby burrito.


Luckily, Emma was just coming out of the sedation pretty much the minute that the test stopped, so that just reassured me that the staff knew what they were doing and gave her the perfect amount of sedation. She was pretty irritable for the first hour or two after sedation which they said would happen but again, it was tough to control a 22 lbs newborn. We strapped her into her stroller and off we were to the car. We got home just about 4:30 and she would kind of come in and go out for the next hour or so, until she was awake enough we could give her some juice and something to eat. That seemed to help a lot and although she still couldn't walk by the time she went to bed at 7:30, she was must more with it, and could at least talk better without slurring her words.

Jackson also did really well yesterday and was awake almost the whole day, so he let us pay attention to Emma and he went to bed early needless to say the bottle of wine was cracked open before I even got back downstairs from putting the monsters to sleep.

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