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Monday, June 17, 2013

The Answer to Our Mystery... is a Mystery!!!

Today I thought we were going to have a day off (boy doesn't that sound nice!?!?!?).  We had therapy planned from 10-12, in our home, and then Conner had Karate at 5:30, but the rest of our day was nice and open.  We thought we would go visit a friend who is in the hospital that we have really been missing and wanting to see. Our plans changed, though, when I got a call from Phoenix Children's Hospital (PCH) this morning asking us to come in at 3:15 for Ramya's dye study.  We headed down, got there, and they couldn't find her time slot.  I worried a bit thinking that I brought the wrong girl for the wrong dye study, as I got a call about both girl's dye studies today.  Thankfully, though, they were able to find her appointment and they got us in quickly.

The whole point of the dye study was to find out what that mystery cavity was through her mitrofanoff.  When I try to cath through it at home, I only have success about once a week.  Of course, when I cathed her through the mitrofanoff for the study, it went straight in the bladder.  go figure!  We filled it up with dye, then they had me take the cath out and try again, so we could see if we could get some dye in the mystery cavity.  Well, that's when things went South.  The catheter went down past the bladder.  They thought it came out through the urethra, but it didn't.  Somehow it entered her vaginal cavity through some mystery passage way.  Well, that, or urine was refluxing  in to the vaginal cavity.  We turned Ramya every which way, but we really couldn't quite figure it out.

After that, I slowly removed the catheter through her mitrofanoff as they put in the dye.  We didn't find any mystery cavity, however, we did find a big gap that explains the oddness we have been having.  There is a section of the tubing material (I think they used a piece of intestines) that is much wider than the rest.  One section of it goes off to the side.  So, when the cath goes in, it's easy for it to go off to the side and not down to the narrow part it needs to.  Here's kind of what it looked like, for a visual...

(and yes, I really did draw that on paint... be jealous of my mad drawing skills ;)).  So it was wider at the top, went off to the side, then got narrow at the bottom.  Where it goes off to the side is where they think the cath keeps coiling and why it's hard to get it to work correctly.
 
I'm glad to have that mystery figured out, though I'm really not sure how it can be fixed and I'm curious to see what the doctor says when we see him.  I'm also a little stumped on our new mystery, and am anxiously awaiting what the doctor says about that as well. 
 
Ramya did very well for the test and everyone thought she was just the sweetest little one (she is).  They said they are surprised I've only had her home for 4 months because she seems so comfortable and I seem to know so much about her already.  I really do think she's doing well so far.  She still loves sharing a bed with us and being rocked and held, but she  is starting to get very independent too, and I hear "I do myself!" quite a bit.  Her English is really coming along and she is learning quickly. 
 
So that's that for now.  I'll update again when I hear from the urologist.  I'm praying we can find a way to fix it or manage it, other than surgery, so please join me in prayer for that as well.
 

1 comment:

Heidi De Love said...

Julian's favorite thing to say at the moment: I know how to do it mommy! followed a few seconds later by: Can you help me mommy? :)