Week of 11-2-09

* Monday - we said already (see below) - entering ICU.
* Tuesday - mostly tests.  Liam is not well.
* Wednesday - I went to work.  Talked to Rachel (who stayed in the ICU with Liam) at around 8:30.  The night was quite, more or less.  An hour later I'm getting another call COME IMMEDIATELY TO THE HOSPITAL.  I didn't ask any questions.  Got in my car and drove into town.  But on the way I was imagining the worst and started sobbing.  It turned out that imagining the worst was not that far from the truth.  Liam was in dire condition.  She was notresponding, her color was gray, her eyes were lifeless, her breathing needed help - URGENTLY.  Many friends and family gathered to support us and to maybe say goodbye to Liam.  But Liam wasn't ready to leave yet.  Somehow she regrouped.  Later that day, after the Dr's explained the situation to us and asked for our opinion, she was intubated (the spell checker complains that it's not a word...but google is happy with it...oh well).  Anyway, we hope that this will perk her up.
* Thursday - she's stable.
* Friday - surprise!  The Dr's say she's breathing on her own so they want to start wean her off the breathing machine.  We're all too happy.  Just two days ago she was going away and here she is doing so much better.  Or does she???? 
* Friday night and Saturday AM:  When she's awake, Liam breathes well enough to be off the machine.  But when she's asleep, her breathing slows down considerably.  She breathes on the average 5 times a minute, where a normal person would breathe 12-20 times per minute.  At the same time, he said, her CO2 levels in the blood is ok (which is puzzling a bit).  Anyway, what do you do?
Do you take her off the ventilator to take a risk and maybe put her back on it in a day or two?  Or, do you leave the big tube inserted in her mouth through the throat?

I told the Dr that looking back at Liam's history, specifically the last year, it seems to me that she's on a down slope.  The Dr's say that her kidneys are well enough, so is her blood pressure.  Her UTI is hopefully treatable.  The shunt was operated on and is corrected now.  If all the suspected reasons can be explained by the Dr's, then what is it?  What causes Liam to breathe so poorly at night?  That is the big question in my mind.  I may be wrong, but it's my guess/feeling that her brain is slowly shutting down.  The fact that she has siezures for the first time in 13 years is a big clue that something is wrong with the brain's function, I think.

To be continued....