Willem -- only days before he was stricken with HLH -- leisurely walking, straw in mouth, not a care in the world. A healthy 9 year old boy.

Saturday, August 27, 2011

All numbers looking great.  Bilirubin is down from 13 to 9 which seems to support the theory that getting some real food in the GI is what Willem's liver needed.  Liver is on the mend.

Willem is far more alert today than yesterday but not willing to talk just yet because his throat is, as far as we can determine, really bothering him.  So he's watching a lot of TV and raising his hand when he needs something; and that something, thus far, has alluded us.

Nurse will be putting Willem in a stretcher-like chair around 4pm today which is good for a change as well as good for his lungs.  He will not be allowed to leave the room however -- something I had not realized.

Doctor spoke of taking out his last chest tube tomorrow and, quite possibly, the last abdominal tube the following day.  More talk of moving him out of the ICU early next week.

I am enjoying watching the machines, tubes, and wires gradually disappear and beginning to feel more comfortable with the optimistic moments.

********** THANK YOUS**********

Thank you Peri for taking Lilia and Wyatt for a few days -- I missed them but you can have them back now. :-)

Thank you to the Ray's for the lasagna -- wishing now that we didn't share it with Syd & Mary. :-)  And thank you for watching Wyatt and Liliana so much.  You guys are awesome.

Thank you Jody and family for the wonderful card and gift certificate that we will most certainly use for fuel.

Thank you Pam

Thank you to friends of Syd & Mary that are sending thoughts and prayers.

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