Wednesday, February 6, 2013

Today's Update

There truly isn't a whole lot of "news" on Peyton.  Any lab work that has been done has come back negative.  That's good, but it doesn't explain anything in terms of what is causing Peyton to be sick.  The PICU doctor spoke with her Cardiologist.  She even had an echocardiogram done.  The answers don't lie there either.  In speaking with the Cardiologist, it's just a mystery.  It's good that it's not pulmonary hypertension.  But if it's not that, then what?  If it's not a pneumonia or other respiratory infection, then what?

The only explanation is the one we don't want to know about.  That is to say, that the only likely explanation for what is going on with Peyton is that she is experiencing a deterioration in her overall condition.  I talked to the Pulmonologist about this.   I think that he is in agreement with this assessment.  Over time, things change. It could be gradual or sudden.  He said it's their goal to try to slow this process as much as they can.

What does it mean?

I don't know.  I really don't.

I'm weary, though.  We're being asked questions I don't want to answer, yet have to.  Just in case.  Then there are all of the thoughts that are racing around my brain.  What if?  What then?  When?  What after?

None of this is surprising.  None of this is unexpected.  But none of this is welcome.

I don't have any answers.  As to the "when" - we don't know.  Years?  I would doubt that.  Is anything imminent?  I would seriously doubt that too.  We just need to keep on keeping on and hope and pray for the best.

Now, aside from all of that, I have not heard anything more about the lumbar puncture being done Thursday.  Peyton had a hip x-ray.  The person who came up to the room to do the xray is one of the people who is always in the room when Peyton is having her gj tube exchanged.  This is due to be done next week, so as long as she was in the room, I asked if it might be possible to have this done while she is in the hospital rather than having to come back next week.  It sounds like this should be possible Thursday as well.

For now, Peyton is sleeping.  She'll be interrupted soon enough for her evening respiratory treatments and meds.  But she's sleeping despite a sudden room change.  Apparently doctors don't take too kindly to toilets leaking down the wall into their office on the floor below!

Anyway, I'm about to tune in to our First Wednesday service online.  This is the first time I've missed being at First Wednesday in many, many months.  Kind of bummed about that too.

I'll keep you posted on what's going on here.

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