Cincinnati Again

We just got back from another trip to Cincinnati.  Heath, Tabitha and I left Thursday morning at 7 and got back Friday night at 7.  16 hours of driving, a night at a hotel, and an hour at the hospital.  It was worth it though.  We got rid of two of the tubes/bags.  These were big and very inconvenient, so we're glad to have those gone!

But she still has two tubes in her bladder to keep it empty.  One comes through the urethra and into the diaper, and the other comes out directly through her belly and empties into a bag that she has to wear all the time.  And she still has the ileostomy, which is a stoma that empties into a stick-on bag on her belly.  The bag is emptied several times a day, and every 2-3 days it has to be peeled off and replaced.  She HATES that.  All of this will continue for at least 8 more weeks.  Because of the tubes going into her bladder she can't go swimming or take baths; she also can't ride her bike for 3 months while the newly-created parts heal.  So no swimming, no bike-riding, and no easy way to wear shorts . . . makes for a real fun summer.  Here's what her belly looked like a few days ago.  Now it's the same, minus the two green tubes:

Since 8 weeks from now we'll most likely be in China, we'll have to wait until after the adoption to do the ileostomy closure.  I REALLY didn't want to do that, but that's how the timing has worked out.  Fortunately Heath's wonderful mom is willing to deal with all of Tabitha's "accessories" while we're in China, so the kids will all be staying with them.  When it's time for the surgery, we plan to take the whole family to Cincinnati and make another "vacation" out of it, so that we're not splitting up the family again so soon after our adoption and China trip.  I just keep wishing everything could've come together sooner so that all of this was taken care of last year!  But at least next summer should be OK!

As far as Tabitha's progress goes, the doctors were pleased with how everything's healing.  They said it's looking great!  We actually ended up seeing all 3 of her doctors at once instead of 3 separate appointments.  It was really great to have them all there in the same room at the same time.  (We love that Cincinnati team!)  There's still a lot going on though.  In another week we start dilations to make sure the anus doesn't heal too small.  That means twice a day for the next 3 months inserting a metal cylinder and increasing the size each week.  Once the ileostomy is taken away we'll go back to daily enemas for about 6 months.  After that we can try to potty train, but we don't know for sure whether or not she'll have bowel control.  She did show muscle movement at the exam yesterday, so I guess that's a good sign.

Gynecologically she'll just need regular exams to make sure the tissue is all staying healthy, and to check for cysts.  When they were doing her surgery they found an ovarian cyst which they removed and had tested.  In all the drama of the ileostomy and tubes and all, I didn't even have time to worry about that and almost forgot about it.  But when we talked with the doctor yesterday, she said it was benign and not a problem.  Thank the Lord for that!

Since she has the tube in her bladder and has kidney reflux, we have to flush the tube with antibiotics once a day, in addition to the oral antibiotics she takes.  She has stage 2 kidney damage, which is our biggest concern for her long term health.  Please pray with us that it doesn't get any worse, or even that God would miraculously reverse the damage.  She will need re-implantation of her ureters in order to fix the reflux (which is kind of like a leaky valve that needs to be replaced).  After the ileostomy closure this summer, more testing will be done on her bladder/kidneys; based on that her urologist/nephrologist will make plans for exactly when and what to do with the bladder and kidneys.  So she's got at least 2 more surgeries coming up in the next year.

Please keep praying for her health.  She's at a higher risk for infections because of the tubes, and with her kidney problems an infection could be very serious.  Also pray that her long term health would be good:  kidneys, bowel control, bladder issues, etc.  She has a lot going on.  Please pray for her emotions too.  She absolutely hates having the ileostomy and has been begging to ride her bike and go swimming but can't do either for most of the summer.

I'd also appreciate prayer for God's continued grace in helping me deal with all of this.  We had a major leak from her ileostomy on Wednesday during her nap.  It was pretty much the grossest thing I've ever dealt with in my life.  I'll spare you the details, but just imagine a leak while she's asleep, and then trying to get her dirty shirt off over her head.  Yup.  It was disgusting.  And Heath wasn't home so I had to deal with it.  Amazingly, I did not lose it, and I was even able to comfort Tabitha who was quite upset.  I don't think I'm exaggerating much to say that that was a miracle.  In my own strength I couldn't have come through that at all calmly.  So I know God is working, and I know He is with me providing strength every step of the way.  And yet I still worry.  How will we handle this?  How will we handle that?  What if this?  What if that?  And I still hate that we have to deal with this at all.  But I can definitely see God working on me, and somehow He will bring good out of all of this.

Now I need to focus on our last week of school and then getting ready for Baby #4!  Yay!!