Current admission?  3 months (minus 2 short days) & counting.  Number of 30 day periods spent out-patient since January 2008 (2 1/2 years)?  ONE!

I CAN’T do this… I can’t DO this… I can’t do THIS… I CAN’T DO this… I CAN’T DO THIS ANYMORE!!  How else do I say it?  Are there other words that would make it clearer??  How do I get this team to hear me??

That’s how I prepared to start my conversation with Dr. M this morning, but then it dawned on me… what’s the point?  What does it really mean?  No one is keeping us here against our will.  I brought Emerson here to be treated because I believe they are the best at what they do.  2 1/2 years ago I asked them to save my daughter's life.  They did that.  They are not God… they cannot “cure” her.  Emerson is sick.  She was born this way.  They are not making her sicker, they are trying to help.  They don’t want her here anymore than I do.  Indeed this is the dark side of transplant.  And unfortunately, this is Emerson’s course.  So, now I’ve decided to take another approach…

Dr. M came in & I shot straight to the bottom line… this is what I want & why.  No more vague statements implying the difficulty of all this, rather a firm plan about what I’m willing to accept as far as treatment goes.  “I can’t do this anymore”… okay, that’s been well established but what are we going to do about it?

Here, in a nutshell, is the problem (understanding the basic principal of it all – anywhere there is plastic in the body there is a breeding ground for serious infection):

Emerson’s antibiotics finish Friday.  If we follow the plan of catheter dilation it’ll be 3-4 weeks until the next dilation &/or final surgery & she’ll sit for the next 3-4 weeks with a central line & a plastic bladder catheter in place.  That, my friends, is a massive recipe for disaster.  I think about it & visions of the code run rampant through my head.  She harbors a highly antibiotic resistant, life-threatening organism.  You put plastic in her body, stop the antibiotics, & boom – you’re asking for it.  Unfortunately, the next “it” could really be IT.

Do you pull the central line & place another one before the next surgery?  Then you’re looking at a likely UTI from the plastic in her bladder, but may avoid another dreaded round of sepsis.  At the rate at which we’re placing & pulling central lines, though, Emerson’s next life-threatening condition will be the loss of central line access.  She’s already lost all peripheral access.  To lose all central access too would be catastrophic at this point.  We’re between a rock & a hard place right now.  There are no easy answers.  This organism has morphed again & we’re now officially OUT of treatment options - the price of poker has just gone up (Dr. M chuckled at that commentJ, but it’s true).

To make things even worse, the whole process of dilating this hole & turning it into a permanent stoma for urine drainage has never been done here before.  They don’t even know if it will ultimately work.  The possibility of us getting “stuck” here for many, many more months is becoming a near certainty.

So… what do we do?  We end this.  That’s what we do.  We find some way to complete this process NOW (rather than 3-4 weeks from now - you might be surprised to know how much can go seriously wrong in 3-4 short weeks), we pull the plastic from her body, & we send her tired little body home to Colorado and see what happens.  Maybe she can do it, maybe she can’t, but she doesn’t have a fighting chance the way things currently sit. 

To sum it all up, this is what I want: 

·         A permanent hole for urine drainage

·         All plastic OUT (bladder catheter & central line)

·         HOME

Now another option has been thrown into the mix – should we just remove Eme’s bladder all together?  She has a completely non-functional bladder that is (by all accounts) harboring a deadly infection.  Why are we trying to save it?  It will never work.  The only problem is it would entail a major surgery through her transplant scar.  Everyone wants to avoid that for obvious reasons, but again… the price of poker has just gone up.

In a surprising end to it all, Dr. M said “This may not happen often, but I agree with you 100%”!  So, Eme had her dilation surgery today.  Dr. M will review with all the other surgeons, eyeball the bladder catheter site tomorrow, & either

1) follow through with the original plan & perform the final surgery to create a bladder stoma either Friday or early next week, or

2) remove her bladder next week. 

Either way we’re looking at about 2-3 weeks of recovery & back to Colorado.

It’s time…

Oh, & for what it's worth - I think she can do it.  I really, really do!!

Sorry if I didn't explain it well, I've already had this question a few times:

If they remove Eme's bladder how would she pee?

They'd attach the ureters (the tubes between the kidneys & the bladder) to a piece of small bowel & bring it to the surface to create a stoma.  It would look just like her ileostomy, but it would drain urine.  This is done routinely with people who have bladder cancer.  All urine, then, would drain from her kidneys directly into a bag attached to the outside of her body.