May 28, 2013...sorry to post this so late

Never ceases to amaze me how time can get away from you.  One year ago, we were being Medflighted to NYC to get Clayton's hemorrhagic cystitis under control.  It just feels like yesterday.  Thank God it wasn't.

I mentioned that when we got back from NYC, I got sick, but about the time I got over it, Clayton got sick.  The doctor said his turned into an ear infection and he's been on an antibiotic for nearly a week, so we've just been tending to Clayton around our house.  Right now I am awake at 4 a.m. Writing this and listening to him breath.  He had some somewhat questionable breathing noises that scared me.  They might have been nothing, but I gave him his oral steroid and albuterol breathing treatment just in case and I have the nebulizer on standby.  It is the first time I have done that since starting his inhaled steroids in January.  I hope and pray that after his back we have even less reason to worry!

So, about his back...it's less than two weeks away!  It's sneaking up on me.    I promise I will come back and do a tell-all about what we know about the traction.

We also went to Birmingham this past Tuesday and saw his urologist at UAB; it was the first time we've seen him since Clayton got cancer.  We were checking with him about Clayton's urine retention and whether or not he had anything to offer for treating it.  Lastly, we were inquiring about the hydro nephrosis on Clayton's kidney from his last few scans.  The good news is that he is not worried about the hydonephrosis, he said that what he sees on the scans is what he would expect and as long as the function remains fine, he is not worried about it.  The bad news is that he expects that hydonephrosis because of the way Clayton's kidney started out.  As he put it, Clayton's surgery on that kidney as an infant was "buying us time".  I guess George and I had gotten comfortable enough to foolishly think maybe that kidney would last Clayton forever.  

The only unresolved issue to tend to now is the stent in Clayton's ureter.  Now, we have to check with our local urologist for that one, partly because the urologist in Birmingham said he wasn't going to "be the putz that took it out" if our beloved docs in NYC hadn't really wanted it out- our B'ham doc didn't seem to connect that our NYC docs told us to check with our local urologist about the stent. Luckily, our local urologist is friendly with Dr. La Quaglia, so I have the utmost confidence they can figure it out.  But, since we have to leave for Texas soon, who knows when we can get this done!