Tough coming in this morning and seeing my son. More tubes and more machines. So this is what they've got going into him from various bags (I do not know what they all do just yet):
fentanyl
versed
milrinone
norepinephrine
albumin
TPN
lipids
heparin
doxycycline
vancomycin
anakinara
gentamicin
I do know that some of the abovementioned meds are related to the fact that, during the early hours, Willem went into shock.
He is doing very well on the intake and output balance; i.e. fluids are going in and out properly -- something they were having trouble with before. He is producing more urine and his poo is looking a lot more like poo.
Willem opened his eyes briefly and I got to tell him I love him and he went back to sleep.
He is still running a fever but this is to be expected; well, I expect it -- he is, after all, fighting an infection.
In a few minutes there will be a blood marrow test to test for the HLH.
'Discussed Occam's Razor with the nurse and we agree that, as Occam's Razor suggests, with all of the competing hypothesis, the simplest one is probably the truth; i.e. he's fighting a terrible virus, nothing more, and only time and support will fix him.
The book Blink has been discussed a lot lately as well. Thank you SSG Schinsky.
Just got labs back that support Macrophage Activation Syndrome (MAS) brought on by the gastroenteritis. I am being told, at this very moment, that there is a dramatic reversal of the inflammation expected within a few days of giving him the medicine that addresses MAS.
I am leery of hope but here, now, is some hope.
The infectious agent? They do think that it is indeed the Tyhphoidal Tularemia.
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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