Emerson is looking good (& I posted a picture to prove itJ)!!  So good, in fact, the surgeon this morning said he’s going to start weaning her steroids & immunosuppressants in preparation for another transplant!!  Infectious Disease said she has 3 more weeks of treatment for the endocarditis (infected vegetation on her heart valve), then she’ll be clear to list from their perspective.  The surgeon said it would be nice to see her out of the PICU for a few weeks, but it’s not a necessity.  Hopefully in the next 4 weeks, realistically, we can get her back on the list.  She’ll need another complete transplant – liver, small bowel, and pancreas.

The surgeon said this next time around is going to be tough (hard to imagine it could be any more difficult than what we’ve already been through).  He said 5 years ago she would’ve had virtually no chance for survival, today there is hope.  Medications are better and surgical procedures have advanced.  She’ll receive this transplant, though, in a much more compromised state than the first time around.  Above all, she’ll be immunosuppressed, which will greatly increase her risk for infection post-transplant.  Additionally, she no longer has her native anatomy, and what is there has been manipulated many times.  This makes surgery more complicated and more risky.

And I’ve been meaning to address the reader who asked “why another transplant now?”.  Eme lost over 90% of her bowel & is 100% TPN dependent.  She cannot remain on TPN, her liver is already showing early signs of damage.  Additionally, with the organs gone her body cavity will start to shrink.  If it shrinks too much there’ll be no room for new organs & transplant won’t be possible.  The time window for re-transplantation is limited.  Further, her risk for central line infection is too high and she has very few sites remaining for access.  She needs line access or surgery won’t be an option.  Earlier in the year Eme was given 6-12 months to survive without transplant.  Her outlook now is even less optimistic.  She needs another transplant as soon as possible.

Finally, on to one of several things that are going on (& consuming all my mental energy these days).  I received a call from our Colorado Medicaid Coordinator last week to tell me Colorado Medicaid is DROPPING Emerson effective the end of the month!  There was some confusion at first as to what, exactly, was being lost.  I now know Emerson is losing ALL medical coverage.  She’s exceeded the lifetime maximum on our private insurance policy, so Medicaid is her only insurance – and Colorado Medicaid is closing her account!  It’s complicated, so I won’t go into all the specifics.  There are many different ‘types’ of Medicaid – Emerson is on a waiver, which considers her medical condition but waives parental income as a requirement for coverage.  Long story short, there are 2 conditions under which she’s being dropped - 1) she’s been in the hospital too long, & 2) she’s receiving care in Nebraska, and therefore should be considered a Nebraska resident (and no, she’s not eligible for Nebraska Medicaid – she is clearly NOT a resident of Nebraska…her home is in Colorado, her parents pay taxes in Colorado, her Dad is a business partner in Colorado...)  Absurd, I know.  As someone said – unlike the auto industry, Medicaid can’t apply for a federal bailout package, they are the federal government.  Instead, they’ll cut costs anywhere & any way possible.

Needless to say, I’m in the thick of a major battle.  The thought of Emerson losing insurance coverage right now makes me physically sick.  She will not be re-listed for transplant without financial pre-approval.  I told the social worker this week that Emerson has fought WAY too hard & overcome WAY too many odds to lose her life because of some insurance nonsense.  She assured me that won’t happen.

Our current plan of attack is to apply for expedited Social Security Disability Income, which automatically qualifies her for regular Medicaid.  Assuming she’s accepted, though, it would only cover her while she’s in-patient.  Our personal income would disqualify her once she’s left the hospital.  She would have no out-patient insurance coverage.  So, we’re fighting Colorado.  I plan to make a call to the Governor’s office tomorrow.

What a mess.  I’m up to my eyeballs in paperwork & phone messages.  Honestly, someone tell me this isn’t really happening.  Who does this?  Presumably someone who’s never sat at their child’s bedside, watching them fight for their life.  Praying for the opportunity to trade places with them.  Begging God to give them one more minute, one more hour, one more day…

I have an appointment with a Social Security representative Friday morning.  Wish me luck.