The final reports are in & Emerson is growing, again, the ever-present Klebsiella in her urine.  It came back after only 3 days off antibiotics.  As I said before, this one is nasty – the worst UTI (at least on paper) she’s ever had.  The sensitivities returned today & the bug has now morphed from an ESBL to a KPC.  Infectious Disease in Omaha treated her last infection (last week) with a combination of drugs testing intermediate in their efficacy.  The bug has now grown completely resistant to them both, which officially classifies it as a ‘KPC’.  I asked how that compares to MRSA or VRE & was told its much, much worse.  My hospital friends will understand all the acronyms – to everyone else just know it’s bad.  I looked it up online & had to stop – it’s more than a mother needs to know.  It’s an antibiotic-resistant superbug in every meaning of the word & it’s very scary.

We are literally at the end with this organism.  Eme was switched today to a drug that’s highly toxic to her kidneys and there’s one possible combination of drugs left to try if this doesn’t work.  One of those drugs is not compatible with her anti-rejection med, though, & causes heart abnormalities/arrhythmias.  We’re obviously hoping to avoid it but infectious disease said they’ll use it if they have to.  Beyond that it's over.  ID said on the entire face of the earth, it's all we have left.

The nephrologist said Eme’s Klebsiella is the single strongest bug he’s ever seen and it may be the strongest this hospital has ever seen too.  She was moved around a lot yesterday, finally ending in the desired location (hematology/oncology, kidney transplant, & bone marrow unit).  Infectious Disease said they’re emptying out the 2 other rooms she was in & hazmat cleaning them this afternoon.  Everyone who enters is in full precaution.  There is possibility for an outbreak amongst other immune-suppressed patients on this hall & that could be disastrous.  Of particular note, though – otherwise healthy children/individuals are not at risk for acquiring this infection.

Emerson is not any better today.  I’d dare say she’s worse.  She’s still sleeping all day & not alerting to much of anything.  She sleeps soundly through vitals, meds, etc.  Her urine looks awful.  She’s pale & still in a lot of pain.  They started her on IV morphine.  The urologist changed out her bladder catheter today - together with the switch to a new antibiotic, things will hopefully start to turn around in the next 24 hours.

I had a really good conversation with a coordinator in Omaha yesterday.  We decided to proceed with a tunneled central catheter (line) here & continue treatment in Michigan until Dr. B is willing to take Eme into surgery.  I’d originally planned to drive back as soon as Eme is stable, but instead have decided to stay here as long as possible, close to the boys.  The coordinator said everyone in Omaha is very sympathetic to our situation & understands the need for us to try and put together a life – however possible.  It’s so, so hard.  At the evaluation (several years ago) I was told about a recent survey of children 5 years post intestinal transplant.  ALL perceived their life as equal to that of their peers.  Wow… that was the dream – not existence, but life.  When we consented to transplant we knew Eme had a 50/50 chance – a 50% chance of having quality of life & a 50% chance of not surviving.  What we never considered, though, was the situation that has transpired… somewhere in-between… a place where Emerson survives, but never finds quality of life… a place where she lives in the hospital, squarely between the worlds of good and bad.  The coordinator said every now & again it happens and eventually the child will declare themselves.  In the interim, though, it’s a challenge for all involved.  She shared with me the sentiment of a mother who once found herself in my exact same shoes – she said, “I’ve lived in my daughter’s world for years, one way or another she now has to come live in mine.”  I tear up just writing it - I so get that.  Don’t misunderstand me, I’d do it all over again.  It was worth it if only for the chance… at the time of transplant Eme had much more daunting odds for survival – 0%.

In all, and back to Eme’s Klebsiella, the news is not good.  She’ll recover from this one, though.  It appears to be contained in her bladder & kidneys, her blood is still testing negative for infection at this time.  They repeated blood cultures today.  We can treat this one… it’s the next few infections to come that could end much differently.  We need to keep them at bay.  In Omaha today, though, there is a little girl in a much different place.  Little Ashley Kate has battled rejection twice since her transplant nearly 4 years ago & is back in Omaha this time fighting for her life.  She has end stage rejection & the situation is grim.  The odds of keeping her bowel are low & the odds of keeping her alive through it all aren’t much better.  I’ve witnessed a miracle, though, & know it can happen!  I can’t get this sweet girl and her family off my mind this week.  It’s one of those few times I actually wish I was back in Omaha to lend a sympathetic ear.  Please join me in prayer for Ashley Kate & her family.  Her mother Trish is sitting bedside while her dad, brother, & sister are back in Texas.  If Ashley can do this it’s going to be a long road back home.  My heart aches so badly for them.  Please pray for their strength & resilience through this terribly difficult time.  Thank You!!