Arrived to find that Willem had a rough morning of fever, diarrhea, and vomiting. There was a little blood in the stool and the emesis was green (bile) from the bilirubin -- which is now up to 16.9 -- not having an exit strategy. Nothing has been grown to suggest what the diarrhea is all about so it is probably mucositis.
Willem's white blood cell count was up a little but his neutrophils were still at zero. Hemoglobin is at 8.3 and normal, for him, would be between 12.5 to 16 so he'll be getting some red blood cells this morning along with his platelets.
Still holding off on feeding him via the NJ because of the diarrhea. Doctor is afraid of irritating the GI too much.
Had trouble doing physical therapy (PT) this morning: Willem was just sick and tired. The physical therapist said his heel chords are very tight and added that he's not been getting enough PT. To which I replied, "Shame on everybody." I will now do some PT stretches with Willem.
Doctor still very hopeful and positive. There are many good numbers in relation to Willem's state of health. He is still on the mend and in very good hands.
I asked the doctor if it was okay to give him kisses. She looked at me kind of funny and said "Of course."
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.
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