It’s a TV show you’d definitely turn off… actually, it’s one that would never have made the first cut, let alone found its way to premier week on your TV this past week.  Speaking of, I hope you all had the chance to catch at least one new show.  I escaped for two new comedies – a nice distraction from my daily grind, which is anything but funny & entertaining.

As you may or may not recall, we had significant behavioral challenges with Emerson about a year ago in Denver.  Child Psych got involved at that time & started two new meds which, after time spent adjusting dosages, helped immensely.  Well... she’s back!  It has been escalating over the past month or so & is now, again, out of control.  Emerson is experiencing significant separation anxiety & OCD behaviors.  I can’t leave the room for anything – not to get lunch or even go to the bathroom.  She screams (& I mean screams)… I can hear her outside the unit & down the hall.  There is no reasoning with her & no calming her down.  Child Psych, again, is involved.  They observed Emerson playing with her dollhouse – she placed the baby on the floor crying & walked the mom out the front door.  Speech therapy also engages in play & almost every session sings “where oh where oh where is mommy” as the little girl sits by herself and mommy is nowhere to be found. 

In addition to that, Emerson is absolutely obsessing over food right now.  It is the craziest thing – she has never eaten & out of nowhere several weeks ago decided she could not survive without a constant flow of ketchup and a spoon.  From there it blossomed into oatmeal, mashed potatoes with gravy, macaroni and cheese, hash browns, chips, ketchup, ketchup, & more ketchup.  The only thing is… she doesn’t actually eat hardly any of it.  She is completely mentally obsessed with it.  She collects food but doesn’t eat it – psych calls it hoarding.  She wants to cook pretend food all day and she’d order plates from food service every hour or more if you’d let her.  Basically she has two modes of play right now – if she’s at the dollhouse mom and baby are separated, if she’s not at the dollhouse she’s making food.  That’s it.  Not watching TV, not napping (heck not sleeping much at all), not doing anything else but screaming.  That’s it.

My days with Eme are spent completely engrossed in one of her activities.  If I’m not 100% attentive she is hitting me and throwing toy cars at my head.  Even when I am 100% attentive she is slapping me across the face.  I put her in time-out & parent her as best I can.  Still, nothing is curbing the behavior.  My original thought was it’s time to re-adjust her medication dosages.  After much observation, though, psych opted to add something new.  They said her behavior falls outside ‘normal hospital psychosis’ & said she very clearly fits the clinical diagnosis for an anxiety disorder.  Apparently true anxiety disorders come in duplicate and are rarely manifested as one, isolated type of anxiety.  Emerson is demonstrating two behaviors – separation anxiety & OCD.  Also, the doctor said anxiety disorders are fairly common in children with chromosomal deletions (Emerson is partially deleted on chromosome 3).  At the end of the day we now have yet another complication from her underlying disorder to add to her list of diagnoses’… hopefully one that we can successfully manage with therapy and medication.  It takes the meds 4-6 weeks to kick in though.  God help me until then!

In other news, Emerson was taken back to the OR for a new central line last week & blood cultures obtained the next day are still negative!  That’s big news!!  She’s on a very intense “cocktail” of very strong antibiotics around the clock – voodoo magic medicine as ID calls it – but it seems to be working.  We’ve been trying to kill this pseudomonas for over a month now.  We once before went 7 days with a negative culture.  Today we’re at 8.  If we can keep it away through the weekend I’m pushing for line removal & discharge on Wednesday.  There’s no guarantee it won’t come back, I know that.  There are no antibiotics left to treat this bug.  Are we simply keeping it at bay or are we actually killing it?  No one knows for sure.  I fear if she doesn’t get out soon, though, she never will.  It’s become such a juggling act to get all her systems working at the same time – it rarely ever happens.  As soon as one thing looks better something else falls apart.  Already they’ve added renal tubular dysfunction & an anxiety disorder this admission alone.  She’s peeing a ton and having trouble maintaining her electrolytes.  She will require sub-q fluid boluses every other day outpatient, ongoing, to maintain her hydration status.  We appear to have a window right now, though – her potassium (on a crazy high replacement schedule) is stable, she’s on full feeds, she’s not dumping, her blood pressures are appropriate, she’s not febrile… the stars are aligning… we have to go.  I’ve been negotiating with ID all week & believe if she gets through this weekend in tact they’ll agree to discharge next week!

That’s the medical update.  Unfortunately my emotional update isn’t quite so upbeat.  I’ve always been brutally honest here & this entry will follow suit.  I’m having a very, very hard time with all this right now.  Emerson’s behavioral issues have come on very strong & are making it very difficult for me to want to spend any time with her.  I can’t do anything in her room – can’t make a phone call, can’t check my emails, can’t pay bills, can’t update the blog - & I can’t leave her.  It’s terrible.  On top of that, I’m starting to feel very resentful for all she’s taken from me.  Five years of my life.  Five years with my boys.  Five years I’ll never get back.  Bradley’s teacher called yesterday to discuss a situation at school & said, “I know you’re doing the best you can, we all have ‘something’… I had Collin 3 years ago, we made it through”.  Boy did that open my eyes – same teacher, 3 years later, same situation… no mom.  I’ve only talked to this teacher once or twice & have never even met her.  I can’t believe this is my life. 

A year ago I was very passionate about promoting organ donation.  A year ago I wanted to work for UNOS & develop an on-line support group for bowel transplant families.  Today I can’t get far enough away from it.  I don’t want any of it.  I just want my life back.  That’s the cold, hard truth.  This sucks.  And the worst part of it all is there’s no way out.  This will not change until Emerson dies & then I’ll have a whole other set of circumstances to live with.  I’m just really struggling with my life right now & how to make sense of it all.  I know I need to accept it for what it is; I just don’t know how to do that.

I made the decision to sleep through rounds this morning & stay in my room to get some things done.  I’ve talked to the nurse several times & Emerson is very upset.  I know how hard this is on the nursing staff.  Eme is very, very demanding & time consuming and she leaves them little time to care for their other patients.  I couldn’t go in this morning, though – there are things I simply must do.  Eme is safe.  She’ll be okay.  The nurse right now is giving her a PRN dose of an anti-psychotic med and trying to put her down for a nap.  I am blessed for these professionals who take such good care of Eme and who love her through even the worst of times.  I can’t say I’d jump at the opportunity to care for my daughter right now, but there are a few chosen nurses who continue to do so.  They are very special people indeed! 

I hope some of this helps to explain my lack of frequent updates recently.  As always, please know no news is (relatively) good news.  If anything acutely life threatening is occurring I will always be here updating.  Between Emerson’s newly onset behavioral issues & my recurring emotional rut, though, I’ve had a hard time finding the space or energy to update.  Over the next several days I intend to be in touch with all the generous followers who’ve offered to help in our fundraising efforts.  Please know I haven’t been ignoring you!  It is approaching October 1st & we have, again, spent the majority of this calendar year (7 months to be exact) in Omaha, 600 miles away from the comfort of home.  Again the expenses are mounting & our fundraising account has run dry.  Please, please consider participating in one of these offers/events.  There are over 2,500 members on the Facebook “Pray for Emerson” page & 3,000-4,000 who regularly read this blog.  Wow!!  If everyone donates just $10 the overall amount raised could be huge!  Thank you for your consideration & thank you, as always, for following along on this wild and crazy journey that is our life.