An Unexpected Turn

Some of you may have already heard that Christianna's adventure took an unexpected turn.  

On Saturday, the girls made checked in to a hotel in Watertown, NY.   That night, a little after midnight, Lin noticed that Cianna's lip was tremoring (and I believe her eyebrows) and she seemed to be coughing.  Something didn't seem right.  They called an ambulance and Lin rode in it to the hospital.  Mimi got dressed and then followed in the car.

Cianna's heart got up to 170 bpm and she was on oxygen.  Lin said she never really came out of the seizure.  She didn't have a full-body seizure, but didn't stop "tremoring" until she was given Phenobarbital.  She was transferred to Upstate Golisano Children's Hospital located an hour south in Syracuse around 5:30 am.  Mimi and Lin headed back to the hotel to pack up, check out and make the drive down.

At some point, a CT scan was done, and came back negative.  A chest scan showed fluid in her left lung.  This was first thought to have been from Cianna aspirating last night when she vomited.  The "gunk" has since been removed and appears to have been there for awhile, as it was discolored.  Now the thinking is she may have been having these "episodes" for awhile.

Christianna was put on a Penicillin drip about 10:30 this morning, and is running a low-grade fever (99-degrees).

She's been intubated for oxygen and to prevent further aspirations.

Unfortunately, when the Phenobarbital started wearing off,  Cianna starting seizing again, so another drip of that was started, along with Keppra (Levetiracetam) another anti-seizure medication. 

Thankfully, the Children's Hospital has a rooms for families - Mimi and Lin got one and were going to try to get some sleep.

That's all we know for now! 

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Talked to Lin tonight about 8:30 pm.  The rotating of the meds (Phenobarbital and Keppra) seems to be working, so the levels are going to be kept where they are.  Dopamine is being added in "to keep the rest of the body happy".

Cianna has an IVs in her neck, hand and groin; she's intubated, strapped down and sedated. The IV in her groin got changed to a bigger one for the addition of the Dopamine.  Unfortunately, there is more of a chance of a blot clot with a bigger needle.  She also had some discoloration in her groin at the IV site, but that went away after an hour or so.


The doctors (nurses? Case-managers?) had a consultation with Lin about 7 or so, and they are basically treating this like it's epilepsy, which is a "wastebasket" term for seizures.  They told Lin what kind of seizure it was, but she can't remember the term they used.  (She did say to be careful looking stuff up on the internet, as there is some misinformation out there!)  They will have preliminary results on the lung "gunk" Monday and the final results Tuesday.


Lin and Mimi were eating when I spoke with them and were going to try to get some shut-eye.


Keep them in your prayers!