Reflux, Take 2

We finally took Emilyn in to the hospital to have the tests done to see if she has bladder reflux like Matisyn.  The picture is of Matt and Emilyn heading inside the Riverton Hospital, Primary Children's Wing.  We had been putting the big tests off because of misleading lab results, a doubt that the condition existed in Emilyn, and a denial that it needed to be done.  She's supposedly had two bad urinary track infections, but neither cultured out in the lab.  The dip test in the doctor's office both times has revealed a severe infection with blood, white blood cells, and nitrates in the urine.  The first time when she was 8 months and the culture came back negative they said she probably didn't have one, but maybe it was because they didn't have enough of a sample.  Then right before Thanksgiving she had an extremely high fever, obvious discomfort, and other signs that pointed to a UTI.  The rapid test in the office again confirmed a severe infection.  We started her on antibiotics and they immediately appeared to be helping.  Three days later we got the same call that nothing had cultured in the lab.  The nurse said to give Emilyn the antibiotics anyway because the doctor didn't think there was anyway it wasn't a UTI, and that she thought it was a lab error.  Still not sure about why these things happened, but it led to why we put off the testing.
Both times I got all emotional and started panicking that we were going to have to go through all the same things with Emilyn that we did with Matisyn.  Matisyn had had more infections by this time, and they always cultured out, so part of me didn't think Emilyn had it, and the other part was too scared to find out.  We finally decided that we better do the tests and find out once and for all what we were up against because every fever can be serious if it is an infection moving from her bladder into her kidneys and I don't get her to the doctor.  An infection or two is normal, but since her big sister had reflux there was around a 75% chance that she would too (I think that was the statistic).   
The first test was a renal ultrasound which, of course, is not painful, but Emi screamed anyway.  She kept "mama-ing" me to save her like it was torture.  All I could think about was how the next test was pretty torturous and this was a walk in the park.  That test, thankfully, looked pretty normal, which means there is no damage to her kidneys yet and no deformities.  There was some pooling of fluid, but that can also be normal.
The second test is a VCUG, Voiding Cystourethrogram, where a big machine takes x-ray pictures of her insides while a catheter fills her bladder with fluid, and then they watch her urinate it out.  They are watching to see if the fluid goes up into the kidneys, what swells, etc.  I didn't cry this time, which is an improvement.  I think I was too focused on trying to calm Emilyn down so she wouldn't flex so much and they could get the catheter in.  Matt held her arms, and a nurse held her legs, while another did the procedure.  I was grateful there weren't sandbags this time, and it was faster than I remember.  She did not like the big machine moving on top of her, and she was obviously not happy with the catheter and fluid, but it happened really fast.  When I looked at the screen it was obvious that she had reflux just from looking at how white with fluid both kidneys were.  One was worse than the other.  She ended up with a level 3 on one side and a level 2 on the other.  It could be much worse, the levels go up to 5.  Matisyn had a level 4 and a level 2.  The level 2 went away on its own, and the level 4 did not.  So who knows what that level 3 is thinking.
The technical name for the condition is Vesicoureteral reflux.  Here are a few facts about it if you're interested.

• Vesicoureteral reflux (VUR) is the retrograde flow of urine from the bladder to the upper urinary tract
• VUR often occurs in association with urinary tract infection (UTI), which is a frequent complaint in the pediatric population
• In patients with VUR, the ureterovesical junction fails to function as a one-way valve, predisposing patients to pyelonephritis by facilitating the spread of bacteria from the lower urinary tract to the kidneys
• VUR is usually congenital, occurs in families, and affects approximately 1% of children
• Unrecognized or untreated VUR can result in reflux nephropathy (renal scarring)
• Extensive renal scarring can cause renal insufficiency, end-stage renal disease, renin-mediated hypertension, reduced somatic growth, and morbidity during pregnancy

So now we have some decisions to make.  It isn't the end of the world, but it's still scary when there is anything wrong with your baby.  We can do long-term antibiotics and it may or may not go away, and we will have to keep doing these tests every 6 months or so.  We can choose surgery which should fix it but causes much pain, money, and unnecessary trauma if it will go away on it's own.  We kept Matisyn on antibiotics for a year, and still had to do the surgery because it didn't seem to be going away on it's own.  Right now we're just soaking in the news, having her take antibiotics, and considering our options.