Post-op Stent Exchange

Exchange successful!  They got in a new bigger stent hoping an increase in drainage could result in increased kidney function.  The doctor did say they had the same degree of difficulty as last time though.  But they got it!  So no nephrostomy tube. However, Clayton is going home with a catheter for a few days.  Just like last time they irritate his poor man parts so much doing this that it swells to the point he can't pee without a catheter.  Nothing we can really do to avoid that.  Thankfully, this time they sent us home with a catheter.  Last time we had to go back to ER the next day and traumatize him with getting a catheter while awake...through his already severely irritated man parts.  So we're doing better than last time.  Should make for a super fun weekend of catheter watching.

As for our future...as frustrating as it is for folks to hear, we just don't know.  Per the doctors today, the best case scenario would involve continuing to do stent exchanges once or twice a year for another two years until he is 5 years with no evidence of disease (cancer) and then deciding if his kidney is in good enough condition for a reconstructive surgery to his ureter.  They would only do that if they felt such a major surgery would buy him a few more years with his kidney.  If they did not feel they could get that kind of reward from that type of major surgery, they would not do it and instead make do until it was time for transplant.  Worst case scenario would be that he needs a transplant within the next two years.  The doctors have zero doubt he WILL need a transplant.  They just don't know if it will be in three months, three years or thirteen years.  In December, his kidney started acting up to the point they thought it might be within the next six months.  Then his kidney responded beautifully to the changes we made and everyone started breathing easier.  Just waiting, never knowing what it was going to do. Then, this past Monday, his creatinine had risen again, but his blood pressure still looked good.  So the doctors are keeping an eye on things and we continue to wait.  They don't know what will happen or when and neither do we.  What happens next is entirely up to Clayton's kidney.  It will fail as fast or slow as it sees fit and we are just along for the ride.

So as frustrating as it might be for folks to hear, "I don't know", just imagine what it's like to be me or George.  We are just stuck waiting on our kiddo's body to fail him.  One of the most miserable and mentally exhausting things ever.

All of that said, I get a really GREAT feeling about the Orlando doctor.  Some people you meet and you get very distinctive feelings one way or the other about them.  I was really struck by how much I liked this urologist.  He is very different from our urologist here.  Our urologist here is a self proclaimed worry-wart.  Our new Orlando urologist is very calm, cool and collected to say the least.  And while I really like them both, I get the sense that the Orlando urologist will really give us a better sense of peace of mind with where we are and where we are going. I know first hand worry-warts tend to think all over the place, so I think this new urologist is the piece of the puzzle we didn't know we needed. 

Now we just wait and see what Clayton's kidney decides to do.  Meanwhile George and I will do more research on transplant centers to be sure we are making the right choice.  And when it seems a transplant is on the horizon, we will see if I'm a match first and foremost and then go from there.

Anyhow, Clayton is doing ok.  We are home now and while he is VERY put off by the catheter, we are home and he is ok.  Trying not to move too much.  Poor bug keeps pointing to the medical drawer trying to tell me to take it out!  That's his way of telling me to get scissors or tape or whatever I need to fix his problem.  :)