Monday, August 25, 2014

A new Blake plan

Last Thursday Blake had three appointments in Iowa City.  It was quite the day!  Seven hours stuck in clinic and entertaining two three year old twins.  
The day started with good lab results, which is always such a good feeling!  I let out a huge sigh of relief on that one.  Our nephrologist was happy with Blake’s current state and how well he is doing.  He even went up three percentiles for heighth over the last month!  
Next up was a pediatric cardiology consult.  Blake has to have a yearly echocardiogram (ECHO) on his heart.  Standard kidney disease procedure.  Apparently there were two bright spots on his heart and our kidney doctor wanted to be sure they talked to us.  I was assuming since we didn’t hear from them immediately, it wasn’t a huge concern.
We waited an hour in that little room for the doctor to come in.  Why were they late?  Well, because they have never seen anything like this before and were researching articles.  I’m not even kidding.  Apparently, these things are prevalent in people who have had transplants.  They aren’t concerned that they are tumors or anything super terrible.  They think it could be some inflammation or some calcification or something.  They were quick to assure me that his heart function is great.  They would like to do an MRI just to get a better look at things, which requires sedation, something I’m never a fan of.  It’s looking like this may possibly happen at the end of September. 
Having fun with a flashlight waiting for the peds cardiologist. 
Next up, the one appointment I had been anxiously awaiting - urology.  Urology and the big try of getting a catheter in.  Our urologist got the catheter ready and then without trying said that thing was never going in.  My heart sank.  
She sat down and if there’s one thing I appreciate about our urologist, Dr. Kieran, she’s always straightforward and you never have to guess what she is thinking.  This is what she said, “Blake is not supposed to be able to pee like a regular kid.  I have never seen anything like this before.  I have never reconstructed a bladder like this and had someone be able to go the regular way.  I’m wondering if we could just go with it.  His labs have been good for two weeks and I’m tempted to do a couple tests, but then just let him be.  I will talk to nephrology and see if I can get them on board.”
I was speechless.  For the second time that day, I was hearing we have never seen anything like this before.  For better or worse, I had two different doctors say the same thing about Blake.  When has Blake ever fit the mold?  Never ever. 
I just got an email from urology this morning that said everybody is on board with watching things the way they are now.  They are going to run a couple of tests (urodynamics and cystoscopy) in which Blake will have to be sedated that will look at his bladder and also test the pressure inside his bladder among other things.  
I  have to admit I cried on my way to get coffee as we headed out of Iowa City.  I was all like, “Why can’t this just be straightforward?  Why is there no black and white with this kid?  Why is it always gray area?”  There I was waiting on doctors to weigh in with their opinions once again and wait for the plan.  

Then I thought some more about it and thought, because it’s Blake.  He does things his way.  He defies the odds.  He always has. You tell him what he’s supposed to do and he will just go and do it his way and prove you wrong.  That’s what this little ball of energy and fire in that three year old body does.  And, wouldn’t it be the best, best, best if all these tests checked out and he could indeed use the bathroom like a regular kid?  Normalcy.  That’s what that would be and that has always been our wish for Blake, to live as normal life as possible despite everything, but that’s just the way I see it.  

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