On Tuesday the docs had told us that even though we had't seen any obvious seizures, they were picking up a lot of seizures on the EEG. They were feeling pretty confident that she would be a surgical candidate and had even told us we could likely go home on Saturday (three days early). As good as that news was, I told Kev that I would feel a lot more confident if she had at least one "good" seizure - one that I saw. Well, I guess that's why they say you should be careful what you wish for because yesterday morning she had three seizures all within a two hour period - and with vomiting in between. The doctor came in and decided they had received enough data before starting her back on meds. Since she had multiple seizures in such a short period of time, they wanted them to stop. He also shared with us that during those big seizures, multiple electrodes were firing at once. So it's hard to tell if those seizures are starting at one point and spreading super fast or very wide-spread seizures that start all at once. He will need time to thoroughly examine the EEG data to determine.
And then last night, the surgeon came in to deliver some scary news.
Now they want to do a biopsy of Cheyenne's brain to rule out a very serious condition called Rasmussen Syndrome. They want to do the biopsy because that is the only way to 100% confirm or eliminate it. They already have the wholes drilled in teh place they will need to do the biopsy, so we would really be remiss not to take advantage of it and do it just in case. However, he can't "squeeze that in" on Friday as he was planning to remove the electrodes on Tuesday, so now we have to wait until our original time slot in the OR on Monday.
They think there's only a low change that she has it - but still A chance...and IF she has it, the only way to "treat" it is to sever both halves of the brain - which you can imagine would present it's own set of challenges to overcome. So then we would be faced with a quality of life vs. quality of life discussion...
And if I'm being honest, I am a complete wreck of emotions. I'm sad and depressed but I'm trying SO HARD not to cry so she doesn't see how scared I am for her. I mean one of us has to be strong! If either of us should be frustrated and crying right now, it should be her. She's the one stuck in a bed for days and days with all kinds of strangers comin gin to talk to her and make her perform silly tasks over and over. She's the one away from her family, her school friends, her toys, her pets - but SHE is handling it very well. She only voices the occasional complaint of "I want to go home." She is a trooper.
And Lord help me, that right now the ONLY thing keeping me from losing my mind is that I know - without any doubt- that she would be dead if she was still in China.
And on top of all of this - we have the scary stuff with Faith going on too. Tomorrow morning we have her first appointment with the neurologist AND with an oncologist. The only bright side is that we were actually able to miraculously get copies of her MRI scan done in China. I received them yesterday and have shared them with Chidren's...so hopefully they will be able to tell us more tomorrow. we could REALLY use some good news.
So please keep praying for BOTH our girls.
And then last night, the surgeon came in to deliver some scary news.
Now they want to do a biopsy of Cheyenne's brain to rule out a very serious condition called Rasmussen Syndrome. They want to do the biopsy because that is the only way to 100% confirm or eliminate it. They already have the wholes drilled in teh place they will need to do the biopsy, so we would really be remiss not to take advantage of it and do it just in case. However, he can't "squeeze that in" on Friday as he was planning to remove the electrodes on Tuesday, so now we have to wait until our original time slot in the OR on Monday.
They think there's only a low change that she has it - but still A chance...and IF she has it, the only way to "treat" it is to sever both halves of the brain - which you can imagine would present it's own set of challenges to overcome. So then we would be faced with a quality of life vs. quality of life discussion...
And if I'm being honest, I am a complete wreck of emotions. I'm sad and depressed but I'm trying SO HARD not to cry so she doesn't see how scared I am for her. I mean one of us has to be strong! If either of us should be frustrated and crying right now, it should be her. She's the one stuck in a bed for days and days with all kinds of strangers comin gin to talk to her and make her perform silly tasks over and over. She's the one away from her family, her school friends, her toys, her pets - but SHE is handling it very well. She only voices the occasional complaint of "I want to go home." She is a trooper.
And Lord help me, that right now the ONLY thing keeping me from losing my mind is that I know - without any doubt- that she would be dead if she was still in China.
And on top of all of this - we have the scary stuff with Faith going on too. Tomorrow morning we have her first appointment with the neurologist AND with an oncologist. The only bright side is that we were actually able to miraculously get copies of her MRI scan done in China. I received them yesterday and have shared them with Chidren's...so hopefully they will be able to tell us more tomorrow. we could REALLY use some good news.
So please keep praying for BOTH our girls.
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