Apr 5, 2012


Silent.  I know I've been more silent than normal.  For a lot of reasons.

One is that I just don't have the time to reflect on my thoughts often, much less have the chance to
 write them down.

Next,  we've been hunkering down into our new "normal".  I know that we are always only one issue away from landing back in the hospital but ... so far, so good.  We've had numerous brushes with it since being discharged February 27, but this is the longest we've been out of the hospital since August!

Tonight we had another of those 'brushes'.  OK you know how he's on the Ethanol Lock Therapy 3 times a week?  Today was one of those days.  And tonight it was time to withdraw the medicine.  Except it wouldn't withdraw.  An hour and a half later and all the tricks I know ... still nothing.  Called the on call nurse.  She didn't know what to do so she called our regular nurse (the only pediatric nurse) who was headed out of state to visit her daughter (which is why I didn't call her directly). 

She knows me well enough to know I tried EVERYTHING else first and that I was only calling to see if they have any extra tricks up their sleeve.  They did not.  The protocol has this scenario in it.  If it has to be flushed versus withdrawn, I just have to over flush and then watch him. 

But of course it wouldn't flush either. 

Finally ... it did.  (Whew!... another close call to a hospital visit.)

And then there is Jacob.  We went Tuesday to his Nephrologist.  The news is mostly good.  The numbers (showing kidney function) aren't horrible but they're a bit worse than 4 months ago. 

Basically, when we discovered this about him almost 2 years ago, his number on this one scale was a 3.  It has dropped over time.  4 months ago, it was 0.5.  And now it's 1.1    So see, not horrible, but going back up slightly. 

Then there's the Spring Cleaning.  Please tell me I am not the only Mother of hoarders.  I HATE clutter with all my heart.  I purge deeply and often.  And yet, the kids all seem to have this strange need to keep EVERYTHING.  2 kids in particular have true hoarding issues for real.  (For one, I know it's related to early issues of not having enough.) 

Trash versus treasure.  I'm trying to teach this lesson.  It's not sinking in yet. 

I WAS able to get through to one child.  I offered that they could keep the items forever if we took a picture of it.  And it worked!  We were able to purge all sorts of stuff that hadn't been used in forever this way.  (I always love when I have a bright idea that works.) 

So ... see how boring our lives are?  THIS is why I haven't been blogging! 

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