A bit frustrated..ok majorly!!
I picked up my daughter's CT scan yesterday to bring to the NS next week. I decided to look at them this morning expecting just to see sag and right coronal cranio. I found the left coronal suture is also closing. Still that is not nearly as troubling as what I found next...
I found there is no cerebral spinal fluid around my daughter's brain and her ventricals are very small. Her brain is pushed right up against her skull!
I immediately called the pediatrician's office and got her partner on the phone. He decided to look at the films. He immediately said "I see exactly what you are concerned about. I want her to see the NS tomorrow. How is she sleeping?" I tell him she has been more irritable, she now is taking three naps during the day and waking several times at night. He says "I'm concerned about intracranial pressures. I know you're a nurse, so if you promise to do neuro checks on her I won't make you bring her in tonight. Just keep a really close eye on her and call the NS and my office in the morning."
That was when I realized her pedi never looked at the films. She relied solely on the CT report and she didn't even read the whole report! She even told me "Well you know, she is a premie. They often just have funny shaped heads. And at her age, I'm not sure she even has true craniosynostosis." I think... I just might lose it!
Reply With Quote
, eye muscle surgeries 2/19/10, 7/16/10
