Hi Everyone ~
Jon had a severe tonic clonic seizure at 2 a.m. today lasting at least an hour. We called paramedics, who administered Versed via his nose. In 15 minutes, the seizing stopped.
But in the ER, his SATS tanked, and he was placed on a vent. We nearly lost him today.
He has pneumonia in both lungs, although it doesn't appear extensive. He has an infected toe (chronic problem) and will see a podiatrist tomorrow.
He had a CT scan of his brain, x-rays, an echocardiogram, and a ton of blood work. No results yet. He is on two antibiotics, and that will likely change once the infectious disease doc gets involved.
The on call neuro is the only one, who listens to me, but he offered nothing in the way of help, other than to increase Jon's pheno. His Dilantin and Depakote levels are higher than his therapeutic range, but we're leaving his doses as is for now. Blood levels will be taken daily.
Jon is on a feeding pump for his formula now, as he desperately needs nutrition. We have a fabulous nutritionist, who knows much more than food. She catches things the docs miss.
The first thing I did was wipe down Jon's ICU room with antiseptic wipes! He is in isolation because he is colonized for MRSA.
Jim and I are exhausted, of course. I came home earlier than usual with a throbbing headache and nausea. Jim and I just rested in bed for a couple of hours, and Jim is sleeping so that he can be at the hospital all night with Jon.
Although I know I don't need to ask, your prayers for Jon's recovery are appreciated greatly.
Sending ((((((HUGS))))))) to all ~
Love & Light,
Rose


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Lisa O: mom to Caitlin (12-CP, VA shunt, seizures), Brandon (10), Tyler (7), Logan (5)
, jeannie
