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.

 

Our Plan of Action

Today Madi had her urodynamics test and we saw Dr. Zuniga again.  We got a few more answers to the Madi urology mystery and now have a plan of action.  Madi's bladder starts to become high-pressure with very little urine in it.  Although her bladder holds a decent amount, she has a lot of pressure in it most of the time.  Cathing more often won't help, because we would basically have to cath every 30 minutes or something crazy like that to keep her pressure low enough.  She doesn't leak, because her muscles work well, but this actually works against her because that means when the pressure gets high, there is no where for the urine to go and it doesn't leak out, so it goes back up.  This is also explains her kidney damage on the side the reflux is on.   Because of this, the bulking agent to fix the reflux won't actually solve her problem.  Even if we did that surgery, she'd still have the high-pressure bladder.  He said the two options we have are either the vesicostomy or an augmentation (they could do the mitrofanoff surgery then as well so she could cath through the belly button).  The vesicostomy would take away the pressure and reflux (hopefully) for now, but it's not a long-term solution.  It is generally a pretty easy surgery with not many negative side effects.  The augmentation is a permanent solution, however, it can't be undone.   It also carries a little more risk as there is more risk for stones, etc..., once it's done.  Usually the augmentation surgery is done when a kiddos is a little older than Madi, and he has never done the surgery in a child Madi's age (4), but he would be open to doing it if it's what we wanted.

David and I have prayed about this decision and both feel that starting with a vesicostomy is the way to go for now.  Unfortunately, Madi will have to go back in to diapers (right now she uses reusable cloth trainers) or pull-ups (we will most likely get pull-ups, and will try to find some cloth ones that still fit her or try to find some cloth ones that can be made larger to fit her), but we feel that choosing this surgery, until she is a little older and can decide for herself, is what is the best for her.  She will likely have the vesicostomy for a few years, and then we will go from there.  Hopefully there will be some better surgery options then, but if not, that's ok to, because at least Madi can help be part of the decision making process. 

The surgery scheduling people from the hospital will be calling us within a few days to schedule Ramya's dye study and Madi's surgery.  They also still want to do the dye study to examine Madi's kidney function, so we will see if they can do this while we are in-patient for the vesicostomy surgery.  The nurse said she thinks the surgery will be July 10th, but she's not sure if the hospital has that date open, so at this point we aren't really sure what the surgery date will be.  Dr. Zuinga thinks we will only have to be in the hospital for a day or so after the surgery, so that's not too bad.

Thanks for praying for us and our sweet little gal, and please keep her upcoming surgery in your prayers as well!  We know God has a plan for her to give her HOPE and a FUTURE and we are so thankful that these options are available to help her little body!