The New Plan

Yesterday they put a bigger tube in her ureter (about the size of a straw) to hold it open more, and hopefully get it to stretch out.  They want to keep it there for 6 weeks, and then we will return to see if that works. The hope is that after 6 weeks the ureter will take that shape and they can slide the tube out and all will be good. If that works then we will be done with everything and not have to come back for a long time! But, if it doesn't work, then they will need to do an actual surgery. They will need redo that ureter, a re-re-implant. It's a surgery with a week stay in the hospital.  So it's kind of like one extreme or the other.  And we'll find out in 6 weeks what will happen. So when we come back we could either be here a couple days or over a week in the hospital.  I talked to the Chief Resident for awhile yesterday, who is brilliant but gives it to me straight, and he said it's like 50/50 odds right now. It really could go either way, and only time will tell.  All the Doctors and residents are so different, some tend to be more positive and others more realistic.  Dr Gearhart, as much as I LOVE him, paints a pretty rainbow of a picture and tends to leave out the really rocky road it takes to get there.  I kind of appreciate the "give it to me straight" approach now, because I just need to know what to expect.  My poor friends who's children still have this surgery ahead of them have watched me and Lily go through this, and I think they are terrified. And frankly, it is kind of terrifying,  But . . it's also worth it when you think of the quality of life your child will have.  Lily WILL have a pretty rainbow of a life. We'll get there, I know it.  It's just a hard now.
So, now back home for 6 weeks.  Still with a tube in her back that we'll have to manage. Still only showers, and dressing changes.  Still stressed about the risk of infections.  Still worry about it getting yanked out.  But it's not forever.  I literally have to say this out load every day, it helps me and Lily.  We fly home tomorrow, and will get back to life.  Lily starts school again next week which will be VERY interesting. I'm really not sure how she'll do the first day, it's going to be sooo overwhelming and I know she's behind.  But her teachers are so amazing, I know they will be there to help her. So that's the new plan.