Lillian's medical journey
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So I have kept kind of quiet about this for sometime as I try to process everything and feel comfortable enough to say something now. My daughter Lillian Grace had an "episode" (that's what I'm calling it until we know) on April 1 and then again on April 15. They were initially thought to be seizures but we really don't know still.
The first one was pretty terrifying because I look to the backseat of the car and there is my baby slumped over with no color. I thought that she was chocking but when I pulled her out of her car seat she is breathing. Her entire body had no tone to it and she was unconscious. The whole way to the hospital I am screaming at her to wake up but she is unable to respond. At the ER they draw her blood, X-ray her lungs and perform a urinalysis but noting comes back with an indication as to why this happened. After about two and a half hours in the ER she comes to like nothing ever happen. Two weeks later the same thing happens. We didn't visit the ER this time and like clockwork she came to a couple hours later.
My sweet girl has had a battery of test and we are not even close to any answers. What I can say is there are a lot of "E's" in all of this from two EEGs, two EKG/ ECGs as well as X-ray, urinalysis, blood tests, a Holter and an MRI of her brain (once she is cleared by the cardiologist). This is just what we have already had done or scheduled but it seems that every test is revealing something else abnormal and we have yet to get any answers.
Lillian is a trooper though but some days are rough. It broke my heart a little this week when she started crying at bedtime saying that "today was really a hard day" we were at the cardiologist for the bulk of the day that day. Although we have insurance it is still a pretty hefty amount that will come out of pocket for all of this. Any help provided will be greatly appreciated.
The first one was pretty terrifying because I look to the backseat of the car and there is my baby slumped over with no color. I thought that she was chocking but when I pulled her out of her car seat she is breathing. Her entire body had no tone to it and she was unconscious. The whole way to the hospital I am screaming at her to wake up but she is unable to respond. At the ER they draw her blood, X-ray her lungs and perform a urinalysis but noting comes back with an indication as to why this happened. After about two and a half hours in the ER she comes to like nothing ever happen. Two weeks later the same thing happens. We didn't visit the ER this time and like clockwork she came to a couple hours later.
My sweet girl has had a battery of test and we are not even close to any answers. What I can say is there are a lot of "E's" in all of this from two EEGs, two EKG/ ECGs as well as X-ray, urinalysis, blood tests, a Holter and an MRI of her brain (once she is cleared by the cardiologist). This is just what we have already had done or scheduled but it seems that every test is revealing something else abnormal and we have yet to get any answers.
Lillian is a trooper though but some days are rough. It broke my heart a little this week when she started crying at bedtime saying that "today was really a hard day" we were at the cardiologist for the bulk of the day that day. Although we have insurance it is still a pretty hefty amount that will come out of pocket for all of this. Any help provided will be greatly appreciated.
Organizer
Lisa Abusnineh
Organizer
Hudson, TX
