June 27, 2011

Buddies

Ben and Olivia have grown to be really good little buddies. In an effort to make running little errands easier, I often try to just bring one or the other kid. You'd think the problem would be the kid left behind throwing a fit, but no. It's the kid I bring with me who wants the other kid to come along with them. I ask Ben if he wants to come along with me for a quick trip to the store and he immediately he starts negotiating for Olivia to come along, "Mama, can you bring TWO kids this time?" If I'm trying to take Olivia out with me she starts throwing a fit as I buckle her into her car seat, "Where Ben? Need Ben, mama!" Whoever wakes up from nap time first immediately wants to know where the other one is.

Yep, they are little buddies.





June 25, 2011

The necessities



This is sign for the bathrooms on Blennerhasset Island. When I took Ben inside he asked me, "Mama, are you going to nessitate?"

June 23, 2011

Parade

Took the kids to a Veteran's Day parade this spring and they had a blast...especially when the candy came flying.


June 20, 2011

Who's that lady?



Yeah, something you probably won't see again for quite some time - becca. Yep, that's me. I'm usually the one holding the camera, so maybe you'll see another picture of me in a couple of years...maybe not! 

June 10, 2011

The inner chicken patty

We spoke with the urology nurse the day after testing and she gave us the details about the results, but we've been waiting to hear "the plan" from the urologist.  We got it this morning.

Good news first.  The urinalysis came back great - no proteins being spilled in the urine.  Woo!  The nuclear kidney scan also looked great - symmetrical function in the kidneys so they are both working well.

On the bad side, the nuclear GFR came back too high.  (Boo!) The blood work showed high potassium, but this could be due to red blood cells being burst in the local area so it might not be a true result.  (Maybe boo?)

The GFR (glomerular filtration rate) shows how well the kidneys are filtering.  The glomeruli are like little filters in the kidneys that take junk out of the blood.  The "rate" is how much blood is filtered.  A too-low GFR shows the kidneys aren't filtering enough.  A too-high GFR shows the kidneys are working too much and can indicate early stage renal failure. 

Can.  Not absolutely does.  Can.  Can. Can.

The first suspect for kidney strain is too high pressure in his bladder.  Ben was born with a very mild form of spina bifida called tethered cord.  He had it repaired just before his first birthday.  Tests done before and after the repair showed that his bladder suffers some nerve damage as a result of the spinal cord problem.  The purpose of getting the tethered cord released was to stop the progression of the nerve damage which could eventually harm his bladder even more and progress down his legs.  His spinal cord also has a fluid-filled cyst inside of it called a syrinx.  The syrinx might have formed on its own or might have been a result of the tethered cord.  Imaging done after the spinal cord surgery showed that the syrinx didn't shrink, but it didn't grow either.  It's possible the bladder is still affected by the nerve damage done by the tethered cord or is continuing to be affected by the syrinx cyst.  Or something else entirely.  The urologist believes the spinal cord issues are the culprit here.  He is being especially vigilant because Ben's intestinal defects put him at a higher risk for having kidney complications. 
They said that many urology practices wouldn't blink an eye at a too-high GFR when the kidneys look so perfect on ultrasound.  But the urology clinic at Cincinnati Children's is very cautious and proactive because they see such specialized cases and - swear on a stack of Bibles the nurse actually said this - "looks at the whole patient and not just our specialty area."

And THAT is why we travel hundreds of miles to get to Cincinnati Children's.

Self-cathing for urine would relieve the high bladder pressure and reverse the process happening right now.  But, in Ben's case, he can't be cathed without a complicated, life-altering surgery which he would be too young to have now anyway.  This means we have to be especially careful and vigilant.  The nurse said today's numbers are not as important as the trend and right now the trend is headed in a bad direction.  So, we are going to watch things more closely.  More importantly, we know what we need to watch. 

Ben will get another renal ultrasound in 6-months.  In 1 year we will do blood work, check the cystantin C levels to determine GFR again, urinalysis to check for proteins, renal ultrasound to check kidney size, and non-invasive urodynamics to check bladder pressure. 
Once again it's not good news, but not horrible news either. 
 
Back when Mike and I were college undergrads he used to like to flirt with me by teasing me about my food choices.  College cafeterias have pretty much the same selection everywhere, even at Oberlin, although maybe they had more tofu on the menu.  Mike was big on the salad bar.  My usual choice for lunch was a chicken patty sandwich.  Mike's favorite charming line was, "Becca, you sure are pretty on the outside but I'd hate to see what your insides look like."



Sometimes, it's what is on the outside that counts. 

June 07, 2011

Outtathere

We are done and on our way out. Ben was super of course. His mamma will be humbly accepting Ninny of the Year Award for getting Ben a "special treat" of candy covered sesame seeds which were actually covered in CHOCOLATE somewhere under there when the tech gave her clear instructions not to let Ben have caffeine. Yeah. Great. So hopefully that doesn't muck up the results too badly because this is NOT a test we want to repeat any time soon. Make that ever.

Well, all that caffeine is sure making the kids hyper...

Chillaxin'

The IV is in and the first two draws done. Now for some chillaxin' in the cafeteria.

Isotoped

We left around 6am and got to Cincinnati Children's around 9:15am. Ben and his mamma hightailed it to radiology while Grandma Linda got the girls dressed in the parking garage. There were all sorts of toys and fun people from Child Life hanging around the waiting area. Ben had a blast. Once he was called back by the nuclear tech there were more toys and his own personal Child Life specialist waiting for him in the radiology suite. He put up a respectable fight getting the isotope injection, but was very good being still for the scan right after (pic below). Next is a urinalysis to check for proteins. He has about an hour wait before his first blood draw and then will have three more every half hour thereafter. Otherwise he will be hanging out being his fun, charming radioactive self.

June 03, 2011

Cystantin C Dees ...

All in all Ben's appointments went well last week.  With one exception (Dum-dum-DUMMMMMMM.)

His kidneys "looked perfect" on ultrasound.  His spine looks nice and stable on x-ray.  And that left us with the blood work lab results...

Phooey.  Well, you know it's not good when the nurses won't tell you the results and just keep repeating the mantra "your attending will review them and let us know the plan."  I kept calling and they kept taking messages and it got pretty frustrating.  Finally heard back from the doctor today...over a week later. 

He said the level that best indicates kidney function, Cystantin C, was higher this time than at his test last year.  Not good, definitely abnormal, but "not interpretable" or as he said, "Let me put it this way - I'm not thrilled."

He was nice to point out several times that the ultrasound was perfect.  That's good!  He also said he doesn't believe it is his GI anomalies at play here, but rather nerve damage from his tethered cord which he described as "tricky."  He said he doesn't often see the high/bad Cystantin C results with such perfect-looking kidneys, but he has seen this a few times and wants to be careful.

So, back to Cincinnati Children's we go.  This time for a urinalysis to check for proteins being spilled, Nuclear GFR and "absolute function" tests which will more accurately show the kidney function.  The tests basically work like this:

- No restrictions before the test (yay!)
- Get an IV placed and get injected with radioactive technetium 99m
- Don a cape and tights and go flying about the city fighting crime (just kidding)
- Come back in a couple of hours for a blood draw
- Go pee in a cup for the urinalysis/protein test
- Come back a few more times for more timed blood draws
- Go get a scan to see how the kidneys are processing the radioactive material ("absolute function")...both kidneys should be working about the same; so if one is glowing more than the other this can show one of the kidneys is damaged
- The lab measures the amount of radioactivity in each sample and calculates the kidney function

Here is a short overview about why these tests are important and what they can tell us. 

Ben had a similar kidney scan, DMSA renal scan, way back in his baby years.  That was...interesting.  It came back just fine.

It would be nice if they can use the IV site to do the blood draws instead of sticking him each time, so fingers crossed for that. 

On the plus side, it seems the whole urology department is horrified about how long it took us to hear back from them about those labs.  I got a call back from the nurse admin, Dr. Alam himself...twice, his nurse practitioner, Debbie...twice, and nuclear medicine called ME to schedule.  All within about an hour.  Dr. Alam said to just email him next time.  Nurse Debbie said to call her the day after the tests for the results and not to call the main number...ever again.  There I was just trying to "follow the rules" (i.e. what was written down in our clinic papers) and not behave like a lunatic.  Just goes to show you when in doubt, be a lunatic. 

We will head back to Cincinnati Children's this Tuesday for all this junk.  I hope the little old ladies running the gift shop are ready for us because I have a feeling we will be in there a LOT. 

And I'll say it again - phooey!