Just a short update.   We settled into a rhythm of sorts this week, though the days have been pretty full. 

We continue to struggle with Alexander’s anesthesia rage, but we may be zeroing in on a better strategy.  We gave him midazolam, then Precedex, then propofol the two days before today and got good results getting him to go to sleep peacefully, but he has waked from anesthesia angry.  All the anesthesiologists that have observed him have said it’s not delirium; he’s just mad.  His anesthesiologist today suggested that we omit the midazolam–some kids don’t tolerate benzodiazepines well.  It seemed to work.  He was mad and difficult when he woke up, but he was not as enraged to the point of screaming as on previous days.  He was slightly more aware of the propofol (the “wobbly medicine”) when it hit him, but he was out in a couple of seconds, and the tradeoff for an easier wakeup is worth it.

Alexander is getting carboplatin, a chemotherapy drug, in conjunction with radiation.  Chemo drugs make the patient’s white blood cell count drop, and Alexander’s experience has been no exception.  To boost his white cell count, he has to get a shot of filgrastim after radiation three times a week.  Since the only thing that truly cures Alexander of his rage is leaving the hospital, being required to stay in the hospital AND get a shot in the arm (can’t go through his port for this) has been a difficult addition to his schedule.

It has been so nice to have Charlotte here with us these last two days.  She doesn’t quite know when to swoop in and when to stay back, but she is always concerned with helping Alexander and making him feel loved.  She’s such a wonderful big sister.  She has also had some fun experiences doing art projects (she made a great pillow for Alexander today–see photo) and learning from Child Life about the hospital and his treatment.  

I was able to get a haircut in the salon this morning, and while I was doing that, my parents took both kids to the Pyramid, which is now a Bass Pro Shops.  They came to the hospital with some swag, courtesy of Grammie and Grandpa.  My mom and dad have been here for over a week and have been such a help and a comfort.  They leave tomorrow; we will be very sorry to see them go.  But we have a few leftovers to remind us of Grammie’s cooking!  Christy left early for Minneapolis this morning and will come back tomorrow; we will be very happy to see her return!