Friday, January 20, 2012

The Inevitable

Not sure why I delude myself into believing that I can postpone or avoid the inevitable, but as I sit in Will's room at MCV, I have lots of time to contemplate it.  Lots.  Of.  Time.

I have this incurable need to make everyone happy, and for me to say that Will needs to be admitted means that pretty much everyone in my household is less than thrilled.  Yes, they love Will and want what is best for him, but it makes life hard all the way around.  Billy is at work fielding issues from home.  Erlene has an extremely busy week yet is sacrificing her time to help with my littles who would like their mom home.  Will, of course, would like to be anywhere but the hospital, and the older boys get to fend for themselves or care for younger siblings which they have had to do way too often.  But, there are times when the inevitable has to happen and so here we are.

Dr. T is out of town, so we are pretty much being managed from a distance through a doctor that doesn't understand (and who apparently did not read his chart before entering the room) which makes life...challenging.  We were put in a real room (Dr. T is gone, so no one realizes that he is supposed to be in a monitored bed...but since we have walls, a door, and a window, we are not complaining...too much) but unfortunately, the nursing staff is not familiar with us, with Will's unique challenges, nor are they working very hard at understanding.  Combined with their inability to meet his dietary needs, this has become a really frustrating experience. 

It is so funny how we grow so displeased with what we have...and want something different.  We wanted a room, a real room.  Well, we got that, but it is at the sacrifice of better care for William.  So what we wanted wasn't necessarily what was best for us.  Hmmmm....

That being said...while it has been an experience fraught with frustration with residents (really?  We have previously had issues, but they have been resolveable.  Not this time!) and less than stellar monitoring of his condition, we are where we need to be.  He is on fluids around the clock, carnitine every 8 hours by IV, and he is back on his meds.    He was in really rough shape this morning when his bp, heart rate, and body temp all plummeted, but he is slowly coming back up to levels that aren't sending the nurses to the phone in a panic. 

How long will we be here?  No clue.  I wish we had better information, but we don't.  I miss Dr. T and her infintely vast knowledge of and care for Will.  :(  I am thankful for Abigail and Chris willingly staying with the kids and grandkids yesterday while Will and I headed to the hospital.  I am thankful for insurance that allows us to be here (despite now officially meeting that  insane deductible in one fell swoop!).  And I am thankful that Dr T is a phone call away.  I just wish all of this weren't necessary.

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