Saturday night set up with suction machine that my mom( the airway pro and RN supreme) helped me acquire. And Oh did the hospital bed that Mr. Jason gave Neavey years ago come in handy.
Monday - Not ready for school yet, but happy with balloons (from one of the publishers that Keith works with) that had met us at home upon our return.
No rest for the weary! Physical therapy started for Neavey on day 3. This is day 6. She was starting to perk up a bit
TCH provided a standing frame as well as a therapist while she was in hospital.
asleep in standing frame
Day 6 - acting more like herself with Keith.
September 11th Neavey's rapid flu culture came back positive. We will never really know if she in fact had the swine flu because Harris county had stopped differentiating between the flu strands after a month of 95% of the follow up testing coming back positive for H1N1. We were told to assume it was H1N1 and to proceed with caution.
Because Neavey cannot clear her own secretions very well if at all when she is sick, we were forced to take her to TCH's ER the next morning, She was admitted and spent 7 mostly hellish nights on the Neuro. Floor. Thank goodness for awesome night shift nurses who don't freak out over seizures (you'd be surprised how many nurses do) and rock out the at upper airway suctioning. Thank you Michelle! Neavey started acting a little like herself around day 4 or 5 but continued to: run high fever every other night, need oxygen, and need upper airway suctioning. Alas, she did get to come home one week after being admitted and has hung in there since then. Keith and I survived only with the help of great nurses and friends. Thanks to all of you who made us meals, brought supplies to TCH and provided rides to and fro.
Her neurologist would tell you she has cryptogenic generalized epilepsy. It's not so much a diagnosis but a state or a condition. What does it mean? Neavey has complex partial seizures and generalized seizures. They originate generally in any part of the brain. And the kicker is...we don't know why she has them, or why we can't control them completely.
And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.
No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.