Update on Kali

A while back I wrote a blog post about my daughter Kali and her incontinence.  She has never been able to stay dry all day that I know, not one single day her whole life!  I mean that's crazy right?  I can't tell you all the things she has dealt with because of it but just yesterday she was telling me that kids at school have made fun of her and told her she smells.  She said some kids said sorry but some didn't.  I'm sure she does smell but it's not something she can control.  So hearing that she has to deal with this already is really hard.  After going to the Doctor this week I finally feel like we might be on a path to answers.

It's amazing how slow things seem to go in the medical field!  I mean I'm grateful for the modern medicine and technology but really it takes so long to get anywhere sometimes!  We've been going to a urologist for about 1 1/2 years to try and understand why Kali has accidents and why things haven't really improved.  So after all that time the urologist just blamed everything on constipation.  My Mom heart just couldn't believe that her inability to make it to the bathroom was simply that she was constipated.  The urologist kept saying that that was probably what it was so we just kept doing all the things she told us for over a year!  That meant we did miralax once a day, laxatives once a week and other laxative liquid once a month.  We also have been to 2 different chiropractors and tested her for things like diabetes, thyroid problems, reoccurring UTI's, to name a few.  I mean if that isn't a crazy circle of frustration then I don't know what is!  Oh and the last time we went to her right before Evelyn was born, about 9 months ago, she thought we never really cleaned her out well enough so that's why were weren't seeing progress so she suggested doing a suppository once a day for 30 days and then every other day for another 30 days!  Kali hated it!  She cried every time she had to do it.  It hurt my Mommy heart to watch her go through that!  It also didn't really make a difference, at least not a huge noticeable difference.

They had told me in August that they would call me and schedule an appointment in 6 weeks to do this urodynamics test but they never called.  Finally after calling like 4 times over the last couple months I got this procedure scheduled and she did it yesterday.  They put a catheter in and then also stuck something in her rectum and filled up her bladder to see what happened.  Basically because of the test we found out that her bladder isn't working they way that it should.  It contracts when it shouldn't and doesn't contract when it should.   Honestly I don't feel I have a complete understanding of what all the test showed but what I know is that now the Doctor wants to do an MRI on her to rule out any neurological problems.  If there is a neurological problem then they would do surgery on her spine to help the nerves somehow.  I can't remember exactly what kind of surgery she said it would be.  Which is like a big wow!  I'm not sure I want my daughter going through that!  All that the Doctor could tell me about it was that they feel the benefits out way the risks.  She said she mostly wants to do the MRI to rule out a neurological problem.  So I don't think she thinks it's because of a neurological problem but if it's a muscular bladder problem then they will try and find a maintenance program that will help her deal with her issues.  So I asked the doctor if that meant she would have to be on medicine for the rest of her life and she said that it's very likely if it's a muscular bladder problem.  She wants to do the urodynamics test again in a few weeks with her on her medicine to see if the medicine helps her bladder to act like it should.  I do think the medicine helps, but it doesn't "fix" the problem.  Also Kali hates taking it and it's always a fight.

You guys this is kind of a hard blow for me to accept.  Zach seems completely fine with it all but for me I just feel bad that my daughter might have to be on medicine for the rest of her life because her bladder doesn't work right.  Can you imagine being a teenager or a young adult and having a bladder problem?  I mean if she forgot to take her medicine and then went on a date she could pee everywhere without being able to control it at all!  I'm grateful there is medicine out there she can take to help but that doesn't make it easy! 

I almost feel like I proved the Doctor wrong yesterday and I wish I didn't feel I needed to say that.  I never felt like all her issues could just be tied to constipation, that just didn't sit well with me!  It has all been such a struggle for me.  I felt like a horrible Mom every time I walked out of that office talking to the doctor, and that's a hard blow.  It's like I wasn't ever doing enough to help with the constipation and it was my fault that we couldn't ever get her dry.  Zach never felt like she was saying anything that would merit me feeling that way, but I'm a sensitive Mom and I didn't feel like I was being listened to.  I feel like she agreed finally do to the test because she thought it would help me not because she thought Kali really needed the test.  As of now I don't really care if it was because of me the doctor said yesterday she thinks it's a good thing we did the test.

Well thanks everyone who reads this for letting me vent all of this out and share my experience.  I really hope this can help someone else who might be struggling as well.