Wednesday, September 8, 2010

Move to CHOPS

Sorry, for leaving those of you who I don't know in person and aren't on my Facebook list in the dark..

Nolen with his Electrodes attached under his sock cap
Yesterday morning (Tuesday the 7th), we (the nurses and I) mentioned to the pediatrician intensivist that Nolen had been sleeping through feeds, and upon the doctors examination she became very concerned like we were about his "floppiness" and his desats (which were remidied at that time by sholder rolls, which are blankets rolled and placed under the sholder making it easier for the airway to stay open and not weighted down or closed by his now "heavy head"). The doctor mentioned that she suspected Encephalitus (related to Meningitis) and wanted various tests ordered. One of those tests was an EEG, but they didn't have a technician available and due to his worsening condition they had us transferred to Children's Hospital of Pennsylvania.

Once here, they immediately put us back under "isolation conditions" which mean the doctors enter the room in really snazzy masks, gloves and aprons to protect themselves and other patients from potential germs Nolen might be creating. After what felt like an endless stream of doctors, questions, exams, and telling of our story, they decided to do a Video EEG overnight (which is much longer than the normal EEG of 4 hours).  Ryan arrived, and since Nolen isn't being fed (he's on maintenance fluids to keep levels up), I left for a quick moments of rest and to take care of a few things at the house for the girls (who are with family). The room here only has one bench-suppose-to-be-bed that only one person can fit despite my very slim size, so we will probably be looking into the Ronald McDonald house which is only about a mile down the road since our home is a little ways away.

Unlike the other hospitals, meals are not included for parents, so Ryan and I will probably end up taking breaks at the Ronald McDonald house and bringing meals back during "shift change". We really don't have anything new to report.

Tests w/results (these were run at the other hospital)
-second 24 hour culture clear
-Blood work, Urine,
-First and Second Cranial Ultrasound Clear

Results due today:
Second 48 hour culture
Video EEG

Tests being run today:
but we may add more
Daddy reading Dr. Dolittle to Nolen. It was our bedtime book while he was away and the girls seemed to enjoy it. Whenever he was awake at Virtua I'd read and he seemed to enjoy it.


welcome to our wonderland said...

we are praying so hard for you guys, my oldest has her school praying for nolen too.

thinking about you guys all the time.

prayers and hugs.

welcome to our wonderland said...

forgot to say keep up posted when you can, get some rest and try to eat. so much easier to say and type then do i know!

hugs and prayers!