Monday, June 9, 2008

Fever = ER for Abby

This weekend we had the privilege of a visit from Grandma and Papa!  While Patrick and I worked on our "almost remodeled" bathroom, Josiah and Abby played with G and P.

Saturday morning Abby woke up with a fever and some coughing.  We started loading her up with Motrin and Tylenol, trying to keep her hydrated and comfortable.  From past experience I went ahead and pulled her Diastat (emergency seizure med) out and left it sitting out on the kitchen counter... easily accessible. 

She had a restless night and coughed a lot.  Trying to keep her fever down we set the alarm to give Motrin/Tylenol through the night.

Sunday morning she still had a fever with some jerky movements.  Eventually the jerky movements turned into rythmic twitches of her lips; which turned into twitches of her left hand, and arm.  With in about 30 minutes of this pattern, including swiping her VNS every 3 minutes or so (which temporarily stopped the seizure), these focal seizures turned into general convulsions.  Fortunately we were ready this time with a new plan!

As soon as the seizures turned from focal to general we dosed her with the Diastat, made the necessary phone calls to her doctors, and loaded her into the van.  By the time we left the house (7 min after Diastat) her seizures had stopped and she was totally out of it.  We drove to the ER as instructed and calmly went through all the registration procedures.  It was really nice not being in a huge panic, running into the ER with Abby still seizing out of control and the staff pouncing on her.

Once she was settled in a bed and hooked up to the monitors we sat back and relaxed for the most part.  Abby slept, and they agreed to not stick her for blood work and IV fluids unless it became necessary.  It was the most organized and easy going trip to the ER we've ever had.  The neurologist wanted to keep her until the meds wore off (4 hrs), but then she spike a high temp (104) so they kept us another 2 hours to make sure she didn't seize again.  We left the hospital around 6 pm, just in time to be home with our family to enjoy a nice dinner together.

Today we met with our neurologist in her office for a scheduled appointment.  Basically we talked about yesterday's event, confirmed our plan of action, addressed her medications again, increased her VNS settings and discussed her reflux symptoms and requested a letter of release for surgery.  She told us it is very common for surgeons to ask for a neurology release before having surgery.  This made us feel better.  

We learned something new too.  She said Abby's VNS will have to be turned off before surgery b/c of a tool commonly used to cauterize that would influence the VNS function.  It is simple to turn off by using the wand also used for dosage setting.  It will be done by a neuro nurse practitioner at Children's before surgery, and then will be turned back on after it's over.  Glad to know that!

We also found out she has lost more weight.  She's down to 12 kg (26.4). 

Then we discussed the possibility of a port placement for future blood draws and IV meds/fluids that might be needed.  She explained the risk of infection that comes with a port placement would also put the VNS at a much higher risk for infection.  If the VNS becomes infected it would most likely have to be removed.  This new insight drops the need for quick IV access down a few notches on our priority list for Abby.  We might reevaluate in the future if things change, but for now we are glad to have this decision made.

Poor Abby is still pretty miserable.  Her fever is down some, but she is coughing a lot and is also now vomiting.  Today hydration has become our focus and just trying to keep her comfy.
Sickness sure is a drag, but at least we are home!