Final Day

We're going home today!  As I type this Heath and Ethan are lugging all the suitcases to the van.  :)

We were supposed to have our final appointment today, but Dr. Levitt was going to be out of town so he met with us yesterday, and we are done!  We've had a good time here, but it'll be so good to get home!

Yesterday we went to the zoo and then to an indoor waterpark, where the kids had a blast!  We did manage to make this trip a vacation with some hospital visits thrown in.  It turned out to be a lot of fun for all of us.

So, here's the medical summary for Tabitha: 

The surgeons in China repaired the colorectal side of things (though not perfectly), but didn't do anything for the gynecology and urology problems.  The good news according to Dr. Alam the urologist is that since they did nothing he's starting fresh and doesn't have to undo anything.  The bad news is that she still needs extensive surgery.  She also has kidney reflux and mild kidney disease which (if I understand correctly) cannot be reversed but shouldn't get any worse if we're very careful with her bladder/kidneys.

Right now she'll be taking one new medication for her bladder, along with the antibiotic she's been taking, to keep bladder and kidneys as healthy as possible.  We'll continue cathing every 4 hours (with a slightly bigger catheter which will make it a little bit quicker procedure), and we need to keep track of a week's worth of urine amounts to make sure that the timing of cathing is correct.  She had protein in her urine, so they want us to see a local nephrologist right away.  I'm not sure what to expect there. 

We'll be giving her an enema every day to clear out her bowels.  This is a big pain, BUT she has been totally clean in between which means she can now wear underwear and no more diapers!!!  Hallelujah!!!!

As soon as it can be scheduled, Tabitha will have her major surgery to reposition the anus to line up with the right muscles, fix her prolapse, probably fix the scar on her belly, and move/create her necessary female parts.  (They're all in there, just not connected with the outside.)  This surgery will require anywhere from 4-10 days in the hospital and probably 2 weeks total time in Cincinnati.  She may have to have a colostomy for a couple months afterwards, but they won't know that until they actually do the surgery.  If she does have one, it will be closed at her next surgery.  If not, she can't eat for 10 days after surgery, being fed only by IV.  I think either option is horrible, so I'm not even sure what to hope for!  After this surgery, it MAY be possible for her to have bowel control and eventually be potty trained, but we won't know that until later.

After that's all healed, and probably several months later, she'll have her urology surgery, which (again...hopefully I'm understanding this correctly) includes fixing the ureters so that she won't have kidney reflux anymore and will save her kidneys from further damage.  Even after the surgery she will almost definitely never be able to urinate normally and will always need a catheter. 

At some point she may need a valve or two put into her belly for easier cathing and administering of enemas, if they will be lifelong needs.  We'll have to wait and see on that.

Wow.  That's a lot.  Right now I feel pretty calm, but sometimes I start freaking out about all of it.  It's certainly more than we would've signed up for had we known...but I can see God providing the grace we need to get through it all, and I know He's teaching us so much in the process. 

Thank you so much to all of you who have been praying for our family these couple weeks (and always).  We have felt God's blessing in so many of the details of this time here, and we really appreciate all the support from friends and family.   

Thanks again!  And now please pray for the REALLY scary part . . . . the drive home!  ;-)