Wednesday, October 16, 2013

Hailey's Bionic Bladder

Hailey has been plagued with urinary tract infections since she was three years old.  We have spent an immeasurable amount of time in doctor's offices for almost five years and the poor girl has gulped down gallons of antibiotics during that time.  When she was 4 1/2 we took her in to be tested for bladder reflux because she was getting them so often and sometimes ran fever.  The testing for that is HORRIBLE and HORRIBLY HUMILIATING for a kid, and when it came back negative, I felt even worse for making her endure that test.  I'm pretty sure she is still traumatized to this day, over three years later.

*It would likely embarrass her if she knew I was talking about this so publicly, but if anyone reads this and has a child with the same symptoms and is at their wits end, hopefully they get the idea to consult a doctor about the same thing.

Not only does Hailey have chronic UTIs, but her urine has a VERY strong and offensive odor.  On top of that, for about a year or so she has had problems with dribbling and for the life of her, can not seem to get it under control.  Not full on wetting, but enough to wet her underwear and drive us crazy.  At first Cody and I would get mad at her for getting distracted and not listening to her body and not going to the bathroom when she needed to.  But over time, we realized that it was something she had no control over and it was futile to get angry about it,  In fact, getting angry and embarrasing her would cause long term issues for her that would probably be irreversible.  So we decided to lay off, remind her frequently to use the bathroom, and to always be on alert for signs of a UTI.

In fact she has had so many UTIs that most antibiotics won't even touch it anymore because she has grown so resistant to all of them.

We decided it was high time to see a specialist, so I made an appointment for her to see the same pediatric urologist who Garrett saw for a congenital issue he had.  Dr. Patrick Cartright was highly recommended by our friend who was doing his own urology residency under him.  I honestly don't know why we waited so long to see him.  Hailey has been dealing with this problem for years, but I guess since everything came back normal back in 2010, we thought that it was just something she would have to outgrow.  We did everything that we were supposed to do to prvent UTIs, but they came nonetheless.  So seeing a specialist was long over due.

I have been very nervous about today because I was afraid they would find something very wrong with her.  Cancer, kidney disease, or a severe anomaly that would require invasive surgery.  I tried to put everything negative out of my mind, trust God, and know that everything would be okay.

She started off with an extensive ultrasound of her entire abdomen.  The sonographer was so nice and even spoke a little French so he and Hailey were able to say bad things about me and I didn't even know.  Hailey actually enjoyed the ultrasound and said it felt like a warm massage.  He looked at her kidneys at length, stopped to take several still shots, and looked all at her ureters and sphincters.  He pointed out that there was a lot of white stuff in the bladder which at first looked like protein (which made me panic) but then he said it looked more like debri.

I was told that she needed to come to the test with a full bladder, and about halfway through the sonogram, the tech told her to go to the bathroom and empty her bladder completely.  I went with her and as always, as she peed she started and stopped several times and had to push in on her bladder to help herself go.  I have always seen her do that and although I thought it was weird, I never thought anything of it.

Back in the room the tech continued his test.  Before Hailey went to the bathroom he measured the amount of urine in her bladder, and when we came back in he measured to see if there was anything remaining in the bladder.  On a normal person the bladder would have been completely empty only a minute after using the bathroom.  But Hailey had about 4-5 ounces left in it, which was shocking.  He also pointed out that the bladder wall was very enlarged.  All of this meant nothing to me. 

The radiologist came in and checked all of the tech's work and said that anotomically everything looked great.  Everything was where it should be and the kidneys were the perfect size and seemed to be in perfect functioning order.  There was no sign of scaring or past infections on the kidneys, but he verified that the bladder wall was in fact very thick and inflamed looking.

Next we got sent up for a consult with Dr. Cartright.  I just love him (as I love every nurse and doctor up at Primarys) and after I filled out a TON of paperwork and questionnaires, he got started by talking to Hailey.  He asked her a million questions and asked me a million questions.  Then he spent a lot of time testing her reflexes.  This was to see if her body was sending the correct signals to her brain, and she passed everything.  Then he did an exam on her belly and her back, and he left to go review her images and notes from the ultrasound.  When he came back in, he had a certain look about him that both concerned end excited me.  I was concerned because I knew that he HAD found something wrong, but I was excited because maybe this meant we had an answer!

He started by drawing a normal bladder on the whiteboard.  He said that Hailey's bladder should be the size of a grapfruit and the wall should be about as thick as the rind of the fruit.  But Hailey's bladder wall was three to four times as thick.  He then drew the bladder and again, Hailey's was enlarged.  He then explained what it meant by urine remaining in her bladder after she thought it was empty.  He said that if there was still over four ounces left when she was instructed specifically to empty it of ALL urine, just imagine how much was always left behind on a normal ocassion when she was in a hurry or just wanting to get it done with.  She probably has at least ten ounces of urine in it at any given time, or more.

He concluded that when Hailey was about three years old, she started having chronic spasms of the bladder and bladder sphincter.  They are supposed to work in harmony, all controlled by the brain, to know when to contract and when to relax (dilate).  When the bladder gets full, it is supposed to contract and upon sitting on the toilet, the brain signals the sphincter to dilate.  This is how we are able to voluntarily release our urine.  But Hailey's bladder and sphincter are extremely over active and contract and relax at all the wrong times, and never in sync.  And unknowingly to any of us, she has been involuntarily working the bladder muscle for years to the point of strengthening it so much that she can't relax it enough to empty it.  That's why she always has to push on it to get anything out.  That's why the bladder wall is so thick.

Why the chronic UTIs?  Because the bladder always has urine in it and never empties.  What does bacteria love to breed in?  Liquid.  Germs can easily travel up the urethra into the bladder, but the normal person can flush all the germs away before they are able to set up shop and breed.  But being unable to empty the bladder, Hailey's bladder is a cesspool for bacteria.  That's why they were able to see very clearly the debri on the ultrasound, and that's why her urine has such a strong and offensive odor.

Where do we go from here?  It's pretty simple, actually.  Her bladder, brain, and sphincter have to learn how to get in sync and that will happen through medication.  Once the bladder knows how to relax and everything gets synchronized, Dr. Cartright is very confidant that everything will domino and fall into place correctly.  She will be on a medication to stop the spontaneous spasming in her bladder and sphincter, she has to very dilligently time when she urinates, and she will be on a low does antibiotic for eight weeks to get rid of the debri in her bladder until it is able to fully empty on a regular basis.

Her severe over active bladder (OAB) condition is nothing that could have been prevented because it's just how her brain and body wanted to work.  Some people are just wired that way, but thanks to modern medicine it can be corrected.  In about six months we will re-evaluate things to see if the medication is working and if the problem is remarkably better, which it should be.  The doc thinks that in two-three weeks we should be able to tell a big difference.  I hope so!  Most people outgrow OAB by the time they are about twelve years old, but for some people it can last into young adulthood.  Thankfully there is a medication to stop the problem from happening, and thankfully we have a doctor who knew exactly how to help her!!

*I should mention that ever since Hailey was night trained, she has never ever been a bed wetter.  So the dribble accidents only apply to daytime, not night time. 

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