The culture on Eme’s urine returned positive for Klebsiella – the indwelling ‘superbug’ that continues to infect her over and over again.  On a very concerning note, though, this time it tested resistant to Colistin.  Colistin was one of two drugs we had left to treat this organism.  Now it’s gone…

I’ve had some very difficult discussions with the team this week.  This latest development is bad news.  We were hoping to get a year or two from Colistin – it is a very strong (& toxic) drug.  It is also rarely used which means these superbugs have not had much exposure to it.  Unfortunately, though, it only lasted 2 rounds of infection… less than 2 months.

As a result of all this, infectious disease has decided not to treat this current UTI with antibiotics.  It is risky.  However, we can’t use up this last drug on a UTI.  We have to save it for her next round of sepsis.  Also, I’ve thought long and hard about it & am asking the team to pull her central line today.  This is also risky.  She’s still requiring fluids & IV cortisol & may, indeed, require this last antibiotic if the UTI gets out of control &/or if it gets into her blood.  We just can’t risk having this line, though; the stakes are way too high.  If it gets infected we’re in big trouble.  So… I’m asking them to place peripheral IVs at all costs.  It’s a nearly impossible feat & will be nothing short of pure torture for Eme.  In the end, though, if it saves her life it’s worth every kick & every scream.  (Update:  they tried multiple times & there’s nothing… the central line will stay in place for now)

As for me, I’m soooooo burned out.  I just don’t know what to do anymore.  I read the blogs from my ‘friends’ who have lost their children & in those moments I feel so bad for complaining.  In those moments I know I’d take anything just to have her here.  Then I look around at these hospital walls and I feel suffocated again.  I can’t live here.  I can’t manage her at home.  I was told I precipitated this latest infection by not cathing her 4 times a day in Disney World.  How do I live with that?  How do I do everything perfectly so I never feel this guilt?  I’ve always said I have to come out of this with no regrets.  How on earth do I do that??

I’m exhausted all day, but I can’t sleep at night.  I want so badly to interact with Eme, but I don’t have the patience to play 3 yr old games.  I tell myself to appreciate every moment, but I can’t stand the screaming – I can’t get far enough away from it.  There are no smiles & giggles right now.  Several wonderful & well-meaning people have offered to bring me dinner or to take me to lunch, but I don’t have the energy to make conversation.  I did get away for an evening this week & I loved every moment with a very close friend, but it wasn’t enough.  One night away wasn’t enough. 

I can’t live like this… but I don’t have a choice, it’s not up to me.  It’ll get better (or it’ll be over) when Eme’s body tells us it’s time.  I have no say.  I don’t know how to do this.  And God help me if it does end... I really don't know how I'd do that.  I honestly don't think I could.  I know there are other people who need me, but it doesn't feel like it.  For over 2 years now it's been just us.  She IS my only purpose right now.  I don't know who I am without her.  Nothing feels right anymore.  This is crazy.

You've heard it all before… I know.  There are no magic words to make it better… I know that too.  Thank you, though, for continuing to check in and for remembering our family in your prayers.

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