Quick update: 

We're going to try & switch Eme's IV antibiotic to every 8 hours & see if her kidneys will tolerate it (larger, less frequent doses).  If so, that should make things a little easier at "home"!  I'll let you know.

Emerson is going out-patient this week.  Pause…  Breathe…  No cheering, please.  There are no changes in her condition, she is not miraculously healed.  The cardiologist who is now involved said she has an infected thrombus (blood clot) & has extended treatment from 3 weeks then re-evaluate, to 4 weeks with a possible 2 more.  Today Eme is on day 12 of 28 for the initial treatment.  That means we have 16 – 28 more days, depending on the outcome of next week’s follow-up echo.  She’ll remain on the very strong IV antibiotic that threatens permanent damage to her kidneys.  She is also now being treated for c-diff.

Upon news of 2-4 more weeks here, I shut down.  I’ve said it before, I know, but I can’t do this anymore.  I can’t live in a hospital anymore.  Call it selfish, okay.  Maybe it is.  But when I say it this time I really mean it – I can’t do this anymore.  So, I asked the team if I could pleeeeease take her back to the apartment.  I think I know what I’m getting myself into & I KNOW it’s going to be difficult there too.  As a matter of fact, I fully anticipate a similar entry next week.  I’ll be drowning, I know I will.

Her daily care will involve 2 nebulizer treatments, 4 bladder catheterizations, a multitude of meds every 12 hours, several meds every 8 hours, and an IV infusion every 6 hours.  Unfortunately, every 6 hours does not mean 4 times during the day.  Indeed, it means every 6 hours.  Med schedules don’t allow for sleep.  Each infusion will take time to prepare & will run for 45 minutes.  If you do the math, you’ll find it leaves very little time for sleep.  Add to all that trips to the hospital 3-4 times a week for labs to monitor her kidneys.  I don’t know if I can do it.  I really don’t - she very well might be back next week.  I only know I have to try.  (And if you’re questioning, & as I’ve said before, Colorado Medicaid will not pay for any home assistance while we’re out of state – it’s simply not available.)

Emerson is feeling better & she doesn’t want to be here either.  She screams at me most of the day.  She needs to be reprimanded & I can’t do it here.  She’s starting to exhibit serious behavior problems & if I don’t address them soon they’re going to get out of control.  They’re quickly headed in that direction.  It’s easy to treat “medical children” with kid gloves.  It’s tempting to want to forgive all their bad behavior.  I can’t do that, though.  It does no service to her.  She needs to learn these hard lessons like every other child - especially if I ever want her to function “normally” in the outside world.   

I just set up her little kitchen.  I have tons of stuff here.  I can’t believe I’m taking it all home.  I just don’t know what to do anymore.  There are no easy solutions…

Thank you so much to all who’ve offered to help with our fundraising efforts.  Thank you so much!  Please be patient with me.  I promise to get back to you all this weekJ.