hospitalmom

"911- what is your emergency?"

"My daughter is two years old. She has short bowel syndrome and a central line and g-tube and I think she is having a seizure and I am worried about a line infection and I need an ambulance to come right away...Please can you come right away?"

Addy had a seizure last week.  She has never had a seizure in her life.  It scared the shit out of me.  I thought she was dying.  I have seen what Addy looks like coming out of surgery, with tubes and bags and blood and black sutures sewn through fresh incisions... and I have seen what she looks like in times of severe pain and projectile vomiting and fountain-like diarrhea and skeletal dehydration... but I have never seen her seize.  I've never seen her with her eyes fixated on the ceiling and her body frozen, shaking and panting for breath...and I've never laid her on the ground only to watch her body squirm and her eyes close and her mouth open with drool coming out because she could no longer control the way her face and body moved.  I've never seen that before.  I've never seen the postictal state that followed as we rode in the ambulance for thirtysome minutes to the children's hospital as she regained control of her reflexes and could suck her pacifier again but still kept her eyes closed and her head down in a way that alarmed both the paramedic and myself that something was still wrong.  It was temporary, thank God.  She eventually snapped out of it when the ER nurse took a rectal temp, which apparently pissed her off enough to wake her up screaming "owwie owwie owwie!  no like it!"

After several tests and cultures and 48 inpatient hours on iv vanco and zosyn antibiotics to rule out line infection (negative! can still say she's never had one!), the doctors concluded that the suspected cause was a febrile seizure, which is apparently common for many normal healthy children... although her temp was only 100.9 (febrile seizures usually occur at higher temps) and her sodium also dropped 10 points in one day without explanation, so we aren't actually 100% certain of the cause.  Hospitalist suggested perhaps it was the perfect storm: sick with a cold, diminished appetite, less sodium intake, sodium drop, short bowel syndrome, fever... all possibly lowering her threshold for a febrile seizure, and bam-- out of seemingly nowhere, Addy is seizing on the kitchen floor for nearly 10 - 15 minutes as we wait for the paramedics to arrive and I'm laying on the tile next to her telling her it's going to be ok praying Please God let her be ok while Rosie is bopping around us offering Addy toys and my phone is a foot away and I hear the dispatcher's voice over speaker telling me that I need to continue to watch her breathing and keep it together because that is the only way I can help her.

Still hard to believe all that happened a week ago.  I'm not sure how I'm going to manage all this when the baby comes.  Grateful for a wonderful husband who steps up to help out, takes time off from work, and helps our whole family make it through.  Also grateful for my two amazing girls who don't let any of this phase them at all-- Rosie was thrilled to ride that ambulance and get wheeled through the hospital on a stretcher like it was a ride at Disneyland... and Addy was just thrilled the cafeteria had hummus, pretzels, and sirloin burgers too.