Emerson had an appointment at Denver Children’s Hospital today and after what turned out to be an afternoon of untimely, nearly unbelievable circumstances & events (one thing after another, after another, after another… you know the drill), I’m finally sitting at home.  Collin is at hockey.  Bradley is with a friend.  Jim is at work.  Emerson is sitting in her pink chair.  The dogs are both sleeping.  Could it be??  Peace & quiet.  A rare moment in this household - ahhhhh…

The appointment went well.  Emerson didn’t look so hot yesterday, but she looks much better today.  Things change quickly, but all in all Eme's holding her own at the moment.  She has an awful odor about her and she continues to vomit spontaneously throughout the day and night.  I’ve adjusted her feed rate & concentration which has helped, but still she’s unable to completely escape it. 

There was definitely a different vibe in the room today.  Everyone was very relaxed… no overreacting to all that isn’t right… no plan to ‘fix’ Eme.  We’ve walked a long path with these physicians – they all know her (inside and out) & we’ve all come to understand each other well.  I really appreciate the place we’re at.  It’s exactly where I need to be right now.

In a nutshell I was asked last week how I felt about everything coming back to Denver.  A lot happened in Omaha.  A lot of difficult things were discussed.  Make no mistake about it – I heard it all, I considered it all.  I obsessed over it all, & ultimately I’m coming to accept it all.  I don’t want to keep talking about it though.  I told Denver I need time off from ‘thinking & talking’ to enjoy my daughter and the summer before us.  I promised to be open to conversation again in the fall… right now, though, I don’t want to talk about it.  They definitely heard me & they’re definitely respecting my wishes.  What an enormous blessing it is.

As for Miss Eme, Dr. N said the foul odor is coming from her wound.  He fears her current situation is a recipe for disaster – open wound, significantly immune suppressed, unhealthy skin, umpteen abdominal surgeries…  He said the skin is our number one defense against infection & hers is no longer intact.  It’s clearly concerning.  Additionally, while it has been healing, it seems to have slowed & the odor and discharge have definitely increased – significantly.  Will it ever fully heal?  Maybe not I’m told.  And what about her bowel perforation?  Again, highly unlikely at this point.  Emerson will be followed now in the wound clinic where they will help to suggest a regime for controlling her risk for infection.

Additionally, we discussed Eme’s continual vomiting.  Dr. N suspects its mechanical (I agree) & a likely result of all the repeated bowel surgeries over her lifetime.  He said the best study to confirm it would be an upper GI.  However… even if it is a mechanical/surgical complication, there’s nothing anyone will do about it.  He made it quite clear that between Denver & Omaha no one will open her up again.  They’re done.  The risk of opening up her abdominal cavity, under any possible circumstance, far outweighs any potential benefit anymore.  And that’s okay.  I don’t want them to go in again.  That part of this journey is over… from that perspective we, too, are done.  In the end I can never say we didn’t try everything possible.  We did.  They did. 

So, no test… we’ll accept Emerson’s vomiting & manage it as best we can.  In an attempt to do so, I’ve significantly decreased her intestinal feed rate and have added tap water to help keep her hydrated.  I fear she won’t be able to maintain on this current nutrition schedule for long though.  Her labs would indicate she’s dry & her urine output is way down.  Her electrolytes are a mixed bag… some low, some okay.  Bottom line, she can’t do this forever.  Of course Dr. N agreed.  He knows the importance of our month at the beach, though, so we are staying the course for now.  Barring an acutely dangerous shift in her electrolytes we’ll maintain as is & revisit the need for a central line after we return.  We don’t want a central line now.  We’ll do anything to avoid it. 

So that’s where we’re at… not perfect, but okay at the moment.  Emerson is weak and not very active, but she’s happy, alert, & thrilled to be home with her brothers and Bella.  She smiles, she laughs, she interacts… she is exactly where she is supposed to be!  We’re heading to the beach next week and our dear photographer friend Mona, from Omaha, is meeting us in Michigan to chronicle a day in our lives together.  We’ll do a few posed photos in the early evening, but other than that she intends to simply capture the family interacting, naturally, throughout the day… my entire family (including my parents, brothers, sister-in-law, niece, nephew)… at my favorite place on earth… the family beach house.  I couldn’t imagine a more perfect, more meaningful gift.  No amount of money in the world could buy the memories she will capture that day.  I am so incredibly touched by the kindness & generosity we’ve encountered on this journey.  So touched…

If you didn’t read my previous post please do so, & please continue to pray for Aria’s family as they face the reality of all that happened this week.  They are a definite reminder to never take a single minute for granted.  Just the week before Aria passed she was improving… just days before everyone was confident she would pull through.  It was a bout of rhinovirus (the common cold) that ultimately pushed her to a place she could not recover from.  That is how fragile these kids are.  That is how quickly things can change.  I am so fortunate… to hold Emerson’s hair back while she vomits… to wake to her cries at night… to tend to her tedious & time consuming medical routine, her beeping pumps.  I am so fortunate for the noise.  It is the silence I fear the most.  Don’t misunderstand me, it’s not easy & it’s far from anything I ever expected or hoped for.  It’s our life, though, & I’m thankful for every day we are given to live it all together.  God Bless Aria’s family and our other transplant friends who are left living only with memories… may God hold them tightly in His sweet embrace until they can all be together again.