About Me

On March 21st, 2010 My daddy left for his last trip away from us. On March 22nd we had to ask him to come home. I had my first seizure that day. One month later I was diagnosed with Infantile Spasms. I have been through a lot in my short life. But I bring so much joy to my mommy and daddy every time I smile.

Monday, August 13, 2018

W.T.F.?

Jayen's neurologist was supposed to be back from vacation today so I started calling around noon. An hour later I received a call back from the nurse asking me to describe his new episodes. I was confused as they were the same things we had caught on video EEG in the hospital but I obliged. She was going to call me back after she talked with the doctor. Some time later she called back and said the doctor suggested we increase his seizure medicine again. I started questioning her and this decision as I have clearly been told these are not seizures. I reminded her that the neurologists at the hospital told me they did not show any epileptic activity. The nurse said she would take that info back to the neurologist and see what she wanted to do. A little while later I received a return call and was told our neurologist reviewed his inpatient EEG and saw "real seizures", he was in fact having seizures and she would like to increase his medicine again. Wtf? Why? When? How? Does this mean the other doctors are incompetent/incapable of reading an EEG? Does this mean they lied? When did she read it? When did they discover this? Why did no one call me? Do we have a new protocol? When do I give rescue medicine now? So many questions but I seriously sat on the phone with nothing to say. I was so fucking speechless. Why does this happen? How does this happen? Does he seriously have seizures again? Who do I believe? What do I do? How can I help him? So much of me wants to run screaming straight to Minnesota. I'm just so lost, hurt, and confused.

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