HOW IT ALL BEGAN - FIRST 7 WEEKS

June 23
-Our 8th Wedding Anniversary Dinner - Wood Ranch in Camarillo.
-Kids ate chicken tenders and carrot sticks (pretty harmless... right?)

June 24
-Jazmyn (age 5) and Kamran (age 2) woke early and were both violently ill all day - house was like a war zone trying to keep up with the nonstop vomiting
-Doctor visit: most probable diagnosis... food poisoning

June 25
-Doctor visit: Kamran looked lethargic and was almost admitted to hospital
-After a rather hefty bm Kamran had a stunning recovery
-Jazmyn proceeded to get worse: lethargic and couldn't keep anything down

June 26
-Doctor visit: Jaz had x ray, lab work, and medicine to help her with bm
-At home: Jaz had about a 20 min nap... she woke up hallucinating, vomiting, and seizing
-Called 911 - ambulance to ER
-ER visit: Jaz seizing every 3-4 minutes, in and out of consciousness... SCARY!!
-ER Doctor didn't have any idea what was happening
-Transferred to Kaiser LA on Sunset

SUMMARY OF TIME AT KAISER LA HOSPITAL

-Pattern: seizure, daze, drift off into unconsciousness and then snap back into consciousness. State of consciousness and coherency lessened each time until she was no longer able to respond. Details to difficult emotionally to explain further.
-Multiple MRI's, spinal taps, CT's, and countless other procedures and tests done.
-Diagnosed with viral encephalitis: Appears to be post infectious. Probably a dormant virus (triggered by the food poisoning) got into her blood stream and went to her brain. Entire cerebellum swollen, refered to also as a brain injury. The specific type of virus may never be known.
-Severe cerebellitis. Loss of all fine and gross motor skills unable to talk, walk, sit up, and control nearly all movement including her eyes.
-Approximate recovery time 6 months to a year. Full recovery possible. We believe she WILL recover.
-Treatment: Viruses run their coarse. Can only treat symptoms. She was given a wide range of antibiotics, steroids, and IVIG. Extensive rehab required.
-Bedside care: Manage like an infant, talk to her as a 5 year old.
-Wide range of neuro affects that changed daily - to much and to difficult to explain.
-EEG: to determine if the posturing is really a seizure or sudo seizure (due to inflammation in the cerebellum). 22 electrodes attached to her scalp and video capture for 24 hrs.
-Medically induced coma and intibated for a few days (she had repeatedly stopped breathing - terrible night!!).
-EEG results: Not seizures and no evidence of epilepsy. Great news!
-GI issues: trouble with NG tube feedings (possibly due to neuro condition affecting her GI's ablity to function)
-After about 12 day's in PICU - moved to PEDS for a quieter room.
-Requested G-tube to make feedings more comfortable and possibly more successful. Also required for rehab eligibility. Upper GI done in preparation for g-tube.
-Jaz started to make positive improvements: responsive, and weak but better movements.
-GI issues gave cause for concern: possible need for surgery (Nissan and or Pyloralplasty).
-Just when we thought we couldn't bare anymore heartache we were blessed with unexpected... SMILES and GIGGLES from Jaz!!
-Making good but very slow progress with rehab.
-To determine if the GI surgeries were needed: Stomach emptying test (results good), endoscopy (looked good as well). Moving forward with G-tube was given the OK and the additional surgeries were avoided. Prayers answered.
-G-tube surgery: Placed a button g-tube for feeding (common procedure with rare complications... usually) Post surgery Jaz was very depressed and uncomfortable. Many symptoms lead up to upper GI and x rays. Unfortunately the tube was placed wrong and all fluids put into the tube (meds, flushes, and formula) emptied in her abdominal cavity rather than her stomach. MORE thoughts regarding this than can be expressed!!!
-Emergency surgery. Misplaced g-tube required a very invasive 3 hr surgery to clean out and correct -HORRIBLE!!! A new g-tube was also placed. High alert for infection (back in PICU). Mega antibiotics. VERY difficult week.
-Healing and eager to get back to a quiet room - moved to PEDS.
-New g-tube appeared to be working fine, tolerating slow start on feedings Jaz seemed to be happier and pulling through. Started to prepare for transition to rehab hospital again.
-Discovered pneumotosis (maybe due to treatments ). Feeds cut off and CT done. CT confirmed diagnosis. Very serious and can be fatal if left untreated. Put on PPN until PICC can be placed. Thankfully does not require surgery at this stage.
- Treatment for pneumotosis: NPO, antibiotics, gut rest, and TPN. CT scan after 2 weeks to determine next coarse of treatment.
-Kamran came to visit for Mommy's birthday(best gift ever!!) . It had been 6 very long weeks apart. Words cannot express the emotions involved in that visit!! Jaz loved seeing her little brother. Kamran loved pushing the buttons on big sister's bed... what fun!!!
-PICC line procedure generally takes about an hour including the sedation required. Jazzy's took 2 1/2hrs. Attempts were made on the right arm with no success. Finally the PICC was placed on the left arm.
-Treating the pneumotosis, and waiting for it to heal. Uncertain how many more weeks in the hospital.
-Keeping rehab going until Jaz can be transitioned to HealthBridge (rehab hospital in Orange).

At this point it is six and a half weeks at the hospital and seven since this all began.