Day 25

Friday, June 29, 2012

What a turn of events. 
I am in shock. 
Where do we go from here? 
I really didn't expect this.
Nobody prepared me this was a possibility.
I'm not sure how to even process this information.

Tom and Katie are getting divorced?! 

Daily update

Without going into too many details, suffice it to say this morning was the worst experience we have had since being admitted 25 days ago.  For the second day in a row, the CT scan was postponed, and today, it was due to the inability to place an IV in Ari's arm.  Yes, he has a central line, and no, that was not radiologically good enough for the CT scan dye. So after way too long of poking and protesting, we made a new plan for Tuesday which will include the bone marrow biopsy and CT scan at the same time (it is a bit more complicated than this, but the details are long and boring.)  They teach you a lot at Harvard Medical School, but common sense must not be on the curriculum.

After Ari ate a breakfast of 5 sausages, 4 tablespoons of hummus, 1 cup of chop suey, and a bag of french onion sun chips, he calmed down enough to go outside and play on the jungle gym.  He spent some time in the playroom, more time taking laps around our floor, and then most of the day looking for "a-bot."

Thank goodness for the hospital robot.  I think the thing is pretty lame, but kids are easily entertained.  This robot travels from floor to floor delivering and gathering materials.  It rides the elevators alone and moves around all by itself (yet excruciatingly slowly...though a good thing for Ari because he can spend quality time with his new pal.) 

Meet "A-bot":

Once Ari's counts are all back to normal, he will have clearance to go floor to floor following the robot all day long.  Awesome.

In other news, all that discharge talk from yesterday may have been a bit premature.  Now the docs are saying if Ari's counts continue to improve, they feel comfortable starting phase 2 of treatment immediately after the bone marrow test.  Although this is a bit of a bummer for us, it would just get things over with a little quicker, and wouldn't be as hard on Ari if we have to leave and then come back.  (And we really like our room.)  Plus, the in-patient duration of phase 2 is dependent on how quickly Ari would process the medication.  The average kid is out of here in about 5 days and then spends 2 weeks at home.  I can deal with that. 



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