Lizzie’s Journey

So, today was the big day.  Lizzie finally had her DMSA scan.  We got to the hospital around 8:30 this morning, so that they could give her an IV and inject the reacting agent.  The test would be 2 hours later.  Of course, things were delayed, but by 11:30 we went back for the testing part.  The test was supposed to take about 20 minutes, but instead our little angel was strapped to the table for 2.5 hours.  I am always amazed at Lizzie’s level of tolerance.  She is an absolutely amazing child.  For the first 1.5 hours she was perfectly happy.  We had an amazing girl from child life services that kept her entertained with books and bubbles, but by hour 2 she was pretty fed up, and who can blame her?  She cried hysterically for about 10-15 mins when she finally gave up and went to sleep.   I have to say that I was pretty fed up by that point too.  We could tell something wasn’t right, but we weren’t sure if it was a problem with the machine or the results.  It was nerve wracking.

We went straight from radiology to our urology appointment where we waited for the results.  When the doctor walked in he explained that her kidneys looked good.  The function is good, and there is not significant scarring.  I was so relieved that I almost missed the “but” that followed.

Apparently there was an “issue” with her right kidney.  The scan showed that the kidneys were shaped oddly, and that the right kidney had some areas on the scan that did not look like they should.  After our appointment, we would be sent back downstairs for a more in depth renal ultrasound to see what was going on.  The urologist explained that her spleen might be lying on her kidney, or that part of her kidney might be “dead” or not functioning.  Either way, it was not significant in her treatment b/c the kidneys were overall functioning well, but they needed a better picture of what was going on.  After it was all said and done, we still don’t really know what is going on, but we do know that her spleen is lying on her kidney and “bending” it, but we don’t think it has any real consequence.

We also did a bladder u/s and found that her bladder is still emptying well, which is great, but unfortunately her blood pressure was much more concerning.  This was her third bp reading in the last few months, the first was high, the second high end of normal, and then today it was really high again.  So now we realize that we are probably looking at childhood hypertension.  We are waiting to see what plan uro wants to take, and in the meantime I will be spending my nights doing research (as usual). I am really hoping it is something we can manage by diet without medicating, but this is one time I will do what the docs suggest without much question.  Bp is not something I want to mess around with.

As for her recurrent low grade fevers, he is at a loss, as is everyone else.  Could be immunity problems, could be nothing (hey thanks for your opinion!).  As for the constant complaining of her bottom hurting, he thinks it is a combination of bladder spasms and constipation.  We have been trying to manage her constipation with a high fiber diet, but he feels it is time to be more aggressive and is insisting on a daily laxative or fiber supplement.  I’m a little disappointed about this, b/c it feels a little like a mommy failure, but you do what you have to do.  We are hoping that if we can eliminate the constipation completely we will have a better picture about the bladder spasms.  I am going to work REALLY hard to keep her off Ditropan for the spasms if possible, simply b/c they have caused her such dehydration issues in the past, and my goodness the girl does not need anymore drugs if we can help it!

We’ve been offered referrals to GI, immunology, and looks like Nephrology now, but what she really needs is a nutritionist.  I need to find a way to balance her diet to support her little body.  Poor thing now has thrush and a vaginal yeast infection, and her little system is just a mess.  Somehow we need to balance a no salt, low sugar, low yeast, no processed foods, and high fiber diet and still get her all the nutrients she needs.  It’s getting a little too complicated for me to do on my own!   I’m just not that good.

So overall, today was a long day, but a pretty good day.  We know her kidneys are working well, and that is by far the most important thing.  We have a lot of other issues to work through, but as long as the kidneys are safe, we have a little time to try and work it out.   We need to be in a place where things are balanced before we take the vesicostomy down, but until then we work out the kinks.  We don’t know what to expect when the vesicostomy comes down, but if we have a grip on all the other stuff, she has a much better chance at success.