"I had a pneumatocele"air pocket" of the right petrous apex for three years neuros told me that it was of no problem.
I am now 5 months out of surgery, of a crainiotomy my air pocket was 4.8mm and was giving me all kind of problems. Noon..."
Thanks for following up. I had a meeting with the pediatric neurosurgeon who operated on her, and he told me she did not die of a subdural hematoma. He had that fully contained and that is why he had the nurse come tell us they were almost finished and what to expect in the PICU for recovery. AFter they cleared the hematoma, BP is suppossed to drop and then react again. She would not come up. They checked everywhere in her body and found nothing wrong other than her tethered cord, large central cavity and slight Chiari I. He said had she come back for a 6 months scan, as is protocol, he could have seen these issues and known what to do when her pressure dropped. We have a lawyer and have contacted local media. I will get justice for my angel...no more babies will go unnoticed and ignored.
One more little note...the attending ER doc the night she was sent to the ER for CT b/c of suspicion of hydrocephalus by our pediatrician just gave a seminar on 10 key ways to stay out of the courtroom...more fuel for my fire.
Thanks so much for listening.
Phebe, I appreciate your support. It is a situation i would not have wished on my worst enemy, and being a mother of a preemie, you know just how much you watch your child for problems and how different it is to be a parent to such a fragile child. We had gotten over the "dark days", and were looking at yreas of happiness with our baby girl, and then this. I will NOT STOP until someone hears me and does something. I have already researched and sent all info of her medical records and situation to a lawyer. Again, not fr money..I do not want that type of justice, I want to make sure not ONE MORE CHILD gets thrown away for lack of caring. I cannot bear to know that another mother would feel this way b/c I did not do anything. That is all I have left now..fighting in my girl Ella's name.
Hi Phebe-Thanks for the info, I'm glad you are doing well. I have had a full MRI of the brain and spine over the past 5 years. I go to the University of Michigan for my scans and neurologist. They have also diagnosed me with antiphospholipid antibody syndrome. They have done numerous blood tests and found nothing else. They haven't diagnosed me with multiple sclerosis but haven't ruled it out. They just don't have enough evidence to diagnose the MS.
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