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Tuesday, April 26, 2011


Foiled again.

I stayed at the hospital last night, intending to scoop him up and take him home this morning.  Unfortunately he has an off-and-on killer headache and a case of the "dumbs" -- the seizure-like symptoms of not being able to bring words to mind or articulate phrases or thoughts.  Concerning, frustrating, and enough of a disturbance to keep him here an extra day for observation.  He had an MRI, EEG, and the gamut of blood work -- all showing things to be "normal" and nothing of concern.  So now it's more observation, pain meds as needed, and some preventative headache/seizure med changes.  (for those of you familiar, Topamax is the likely candidate).

What now? home tomorrow, perhaps.  However, since he could be tomorrow the way he is today, it could be more of a cloistered day in the bed as opposed to a fresh-air day on the porch.  Well, we'll just to have to play it by ear, one day at a time, as is our custom.

The good news: trach is out, sleep is sound, he's able to lie flat.  He is back on food (with limitations and alterations).

Prayers:  That this is temporary.  Even if it's long-term temporary, that the dumbs resolve, the pain subsides, and the other therapy progresses as it has been.  That he's able to feel the prayers, that they lift his spirits when he gets frustrated (he's much more likely to become angry and depressed at not being able to say something he's thinking, or come up with the correct word, than he is that his foot won't do what he wants it to do).

Mental and psychological endurance for me; I'm entering the care-giving stage.

Patience for the kids; dad can't toss the ball or pick them up.  Probably can't read any stories.  That will be disappointing at best, distressing at worst.

Support:  I have no idea what things will look like going forward; we will have in-home therapy for a bit, then out patient. That will mean taxi service, perhaps, or child sitting while I taxi, or a little of both.  Follow-up appointment(s) with surgeon and misc. specialists.  Not sure his tolerance for the everyday goings-on of children, so they might need some playdates; the good news is we're coming up on good playing-outside weather.