Friday, April 11, 2008


What a month this family has endured. First, Ron's surgery that went well with few complications. He is going to start speech therapy to learn how to swallow again, after losing like 25 lbs! Poor guy.

I am not sure who knows that on the same day as his surgery, Jenn was brought to the ER for a 105 temp. I had to leave St. Raphael's and go to Yale to be with her. Mike left Yale and went to St Raphaels. Fran was back and forth and having to deal with the Yale saga. What a mess. After numerous requests and demands to do a strep culture, they refused and sent her home after the culture for Influenza B tested positive. My poor baby went downhill.

Jenn started having seizure like episode. 911'ed her on a Thursday and she was admitted by her liver doc. She was discharged on Friday. Saturday, Jenn has a episode that lasts for several hours. She is admitted again. Then all hell broke loose. She had every test, known to mankind. They found non active strep in her system. They thought she might have a UTI due to dark urine. Started her on bactrim, 3 doses and it was stopped. Her test was negative. They even did a pregnancy test without my knowledge. GRRRRRRRRRRRRRRRRRRRR Good news? She is not pregnant.

Jenn's INR's (platelet count) has dropped significantly. Her liver failure is up a bit. Her portal hypertension is being controlled by an increase of meds. Now this... *sigh*

Jenn then did an overnight EEG study. No seizure activity. Sedated MRI, her brain is fine. They witnessed the episodes, thank God! Her body would go into spasms. Tongue protruded and twisted. Yet she was alert. Time to call in the big guns.

Final diagnosis is movement disorder brought on by the untreated strep! Vestibular disorder, unknown as to why. 13 days later, we are home. We have liquid Ativan to give her when the episodes start.

She has lost most of her skills and we have PT at home plus we are starting outpatient therapy to use a tilt table. Which hopefully will help retrain her to stand, crawl and become the independent child she was before the 17th. It is hell watching her go thru this.

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