Zoe - no answers today, only more questions
The PET Scan results came back negative. It revealed nothing. Looked totally normal. Doctors are shocked. And so, there is still no explanation and nothing we can do other than keep medicating, which isn't really helping anymore. We're upping levels, but even level increases never work for longer than a 1/2 day anymore.
We have to come back for an extremely unique/rare type of PET Scan next Wednesday that is, to the best of my understanding, government grant funded through Detroit's Wayne State University. No insurance involved. Children's hospital is the only place in the world that can even do it. Zoe's fast becoming a story for a medical journal because there are no explanations for her seizures (hence their desire to get us this test, I'm assuming). PET scan doctor doesn't want to give up yet, because to discover that it isn't a structural problem with her brain means that we have to start considering that it is metabolic / genetic, which is a very bad situation in most cases. They did draw blood back at Beaumont a couple of weeks ago to run some metabolic tests, but it takes a while for results to come back for that and we still don't have most of those.
In the mean time, I will be home with Zoe, now through next Wednesday's test (and then some), watching her seize helplessly. I can't help her. All I can do is watch to make sure she doesn't choke.
And then there's the matter of going back to work someday, which I definitely need to do or I risk really messing up what's left of my "career". I'm going to push for one more week off next week to ensure we get to that test (and to yet another EEG test, this time it'll last for 24 hours straight) and to be home to monitor future medication adjustments. But after that we're going to have to come up with some kind of insane grandparent/volunteer rotation schedule to watch Zoe during the days when I go back to work. (She obviously can't go into day care while she's still having regular seizures.)
Also, our friends have been calling us for a while, and I was finally able to finally take one of the calls from Dave today (sorry I was abrupt with you when you called to day too, Jim - sorry I haven't called you back yet Mel) who informs us that people are cooking us meals and collected some money to help us on that front. They've even offered to help us fix that Family Room project (it was sinking and needed to be torn apart to be made stable/level again) that we left half-finished when all of this began. So incredibly generous. It's almost heartbreaking in its own way because you can tell they really are feeling our pain and sincerely want to help. I've said it before, but I must say it again... we have amazing amazing friends. It's the kind of generosity you can't ever repay. I don't think we can let them do manual labor on that room... that room can just wait as long as it needs to wait... but it'd be hard to say no to the meals. They will definitely make the days easier for us for a while.
More thoughts soon. Probably not much more news until next Wednesday, unless by some miracle one of these medication adjustments does something.
-m
We have to come back for an extremely unique/rare type of PET Scan next Wednesday that is, to the best of my understanding, government grant funded through Detroit's Wayne State University. No insurance involved. Children's hospital is the only place in the world that can even do it. Zoe's fast becoming a story for a medical journal because there are no explanations for her seizures (hence their desire to get us this test, I'm assuming). PET scan doctor doesn't want to give up yet, because to discover that it isn't a structural problem with her brain means that we have to start considering that it is metabolic / genetic, which is a very bad situation in most cases. They did draw blood back at Beaumont a couple of weeks ago to run some metabolic tests, but it takes a while for results to come back for that and we still don't have most of those.
In the mean time, I will be home with Zoe, now through next Wednesday's test (and then some), watching her seize helplessly. I can't help her. All I can do is watch to make sure she doesn't choke.
And then there's the matter of going back to work someday, which I definitely need to do or I risk really messing up what's left of my "career". I'm going to push for one more week off next week to ensure we get to that test (and to yet another EEG test, this time it'll last for 24 hours straight) and to be home to monitor future medication adjustments. But after that we're going to have to come up with some kind of insane grandparent/volunteer rotation schedule to watch Zoe during the days when I go back to work. (She obviously can't go into day care while she's still having regular seizures.)
Also, our friends have been calling us for a while, and I was finally able to finally take one of the calls from Dave today (sorry I was abrupt with you when you called to day too, Jim - sorry I haven't called you back yet Mel) who informs us that people are cooking us meals and collected some money to help us on that front. They've even offered to help us fix that Family Room project (it was sinking and needed to be torn apart to be made stable/level again) that we left half-finished when all of this began. So incredibly generous. It's almost heartbreaking in its own way because you can tell they really are feeling our pain and sincerely want to help. I've said it before, but I must say it again... we have amazing amazing friends. It's the kind of generosity you can't ever repay. I don't think we can let them do manual labor on that room... that room can just wait as long as it needs to wait... but it'd be hard to say no to the meals. They will definitely make the days easier for us for a while.
More thoughts soon. Probably not much more news until next Wednesday, unless by some miracle one of these medication adjustments does something.
-m