Thursday, July 26, 2007

a few more days....

Well, I'll try to re-cap things since my last post, and cover what we know now & where things are going from here!

recent events

The road to the hospital is a long one (about 45 minutes, if no traffic), but one we got used to driving when Evelyn was in the NICU. Yesterday (Tuesday 24-Jul-2007), I got up early & visited "the girls" at the hospital before heading in to work. Evie was scheduled for an MRI, mainly because "she's here & it's easy", just to rule out building fluid or other more physiological issues. Though we still haven't gotten the official blessing by the neurosurgeon, preliminarily, everything looks fine.

Anyhow, Tuesday was otherwise a largely slow day at the hospital; "status quo" from Monday, which of course was pretty frustrating. Evelyn was still having strings of seizures run over the course of an hour. They're difficult to "typify", but roughly-speaking, she would wake up, and begin seizing with a very distinct, distinguishable & definable seizure lasting about 20 seconds, once every 5-6 minutes or so, over the course of an hour. More troubling, perhaps, to Kim and I, was that in between seizures, she was just "not herself". Some nurses suggested it was perhaps just Evelyn being postictal (the "altered state of consciousness" after a seizure), which was likely a large part of it - but we also kept seeing many small "almost-seizures", which was a bit unnerving, with it dragging on for up to an hour, many times leaving her too tired to eat.

At any rate, Evelyn's fosphenytoin level was checked, and found to still be quite low - not in the "therapeutic range" - she apparently metabolizes it quite quickly! ;-) So, they gave her additional larger doses of it to move it up, in addition to a phenobarb booster for the short-term.

Kim begrudgingly agreed to spend the night at home Tuesday night, and I stayed with Evie at the hospital. It was a bit of a rough night for Evelyn; she was awake from about 10:30pm-2:30am - quite a long stretch for her - with at least one of those hours seizure-filled as described above, with other smaller stretches sprinkled around. She finally got to sleep about 2:30am, and slept hard until 6:30,am when she woke up - and only had 3 seizures! Now we're getting somewhere! ;-)

what we know & where we're going

Evelyn's levels were checked again this morning (Wednesday 25-Jul-2007), and finally, the fosphenytoin was in the therapeutic range. Her phenobarb was also on the high end, but not at a worrisome level. The theory would now appear to be that the drugs are effectively blocking more of the seizures, which has been the plan since Sunday, to allow the slower-building Topamax to take effect.

Kim arrived around 7am or so, and I left for work around 9am. Evelyn has continued to do pretty well today - still definite seizures, but not the hour-long on-and-off episodes from Tuesday, which is quite a relief. The only slight concern is she's been particularly tired - likely due to both the seizures and the medicine - which is reducing her eating a little, but not tremendously at this point. She's been seen by the neurologist on-call (hers will be in Thursday), who did indicate that he expected she would likely remain in the hospital until Friday. This is fine with Kim and I, at this point. We don't really want to be there any longer than necessary, but we don't want to leave unsure, with things not at a "steady state".

It's a bit of a fine line to walk - We feel fortunate that Evelyn's "regularly scheduled neurologist" sees another child with Aicardi, so he has some idea of what to expect - namely that the seizures, even with medication, will likely persist at some level. We've heard from other Aicardi families to be wary of any neurologist who wants to make them all go away - "perfectionism" being an otherwise-desirable trait in a doctor - as it's likely a futile effort with serious quality-of-life ramifications. You really don't want your child to become a chemical experiment for the sake of the experiment. It's really a question of finding that "manageable and consistent" level of seizures that doesn't have a serious detractor to other quality-of-life areas, as many of the meds can cause drowsiness, lethargy, etc. And if Evelyn was too tired to smile - well, that just wouldn't work at all, now, would it? :-)

Anyhow, Kim is back on the hospital shift tonight, and myself bach'ing it at home with the boys (Rocky & Rufus), after swinging by the hospital after work until 7:30 or so - I wanted to stay longer, but was really feeling the late night/lack of sleep, and with a 45 min drive ahead, felt it best to head on. I'll swing back by the hospital early tomorrow morning (Thursday 26-Jul-2007). We're hopeful that from here, it's a very quiet stay thru Friday (27-Jul-2007), with continued improvement, followed by a discharge. :-)


Anonymous said...

i love the pics in the pool!!! nothing cuter than a baby going skinny-dipping. i let sutton do that in the backyard, and she loves to stand in front of jay and bend over. suddenly the sky becomes very interesting to him.
glad to hear that things are looking up for evie. i am sending up a prayer that you all are home together come friday evening.
love, dallas