Getting Started

     Last Wednesday, I received a call from the school nurse letting me know that Bailey was experiencing blindness in the left eye and heavy feet.  After Dustin and I got there we decided the best option was to call an ambulance because she couldn't walk.  After arriving at the hospital, we noticed that she was highly confused and could not recall basic information like her name or even who Dustin and I were.  After several other tests, they did an EEG which records brainwaves.  Bailey's did not show a seizure but did show slow activity with her brain waves.  We were taken to ICU where she did well and within 24 hours were moved to a normal room on the cardiac floor.  It looked like she had suffered a stroke and they were planning to work on thinning the blood again and sending us home. 
     One problem is Bailey cannot have a MRI which is the test needed to confirm a stroke.  She can only have a CT scan and in our experience strokes for Bailey don't show up for some time on the CT scan.  So as of now, the scan is not confirming another stroke.  When we were moved to a regular room, Bailey complained of intense pain and about midnight she suffered what seems to be another stroke in mine and Dustin's opinion.  Her eyes crossed, she couldn't see, she had drooping on the left side of her face and she only could make sounds.  She was terrified and screamed in incomprehensible sounds for about an hour.  They did another scan and sent her back to ICU.  After 2 doses of morphine, she fell asleep at about 3 am.  The next day she had very limited speech and recognized me and Dustin but really nobody else. 
     I want to respect Bailey's privacy so I am going to describe the next portion carefully and without too much detail.  Bailey told us the next day that she remembered what she was trying to say when we couldn't understand her.  She saw some scary visions that had to do with her own funeral, going through surgery without anesthesia, and talking to my grandmother who is in Heaven.  What she is seeing during these episodes has to do with her own death.  On Friday evening, she experienced another episode like this except this times her screams were understandable.  She cannot hear or see us when this happens and she cannot be snapped out of it.  The ICU staff gave her a sedative and she calmed down after about an hour and a half.  She slept all night and Dustin and I were able to sleep.  The next morning after I returned to her room she started another episode.  The doctors felt it would be the best idea to let it continue until she stopped on her own.  They felt like maybe she needed to work through the episode in order for them to stop.  She screamed for almost 3 hours and they finally decided to give her a medication called Rispiradal (SP?).  This seemed to take care of it and that was the end of it for that day except one small episode that she was able to pull her self out of after a few minutes.  That brings us to today.  She was moved to another unit today called Progressive Care which is an intermittent floor between ICU and a regular room.  She was in good spirits but then again slipped into another episode that lasted about 45 minutes today. 
     The Doctors are stumped about what to do at this point.  We will have some specialist come in on Tuesday to talk to Bailey about what she is seeing and evaluate her.  Many of the Dr's here have said that it is not uncommon for teenagers who have been chronically ill to have things like this happen because of how much stress they undergo during all the medical treatment.  We are praying for answers and for her memory and speech to return to normal.  Neurology is closely monitoring her and we will have a heart cath scheduled when the scheduler comes back in on Tuesday.  She has had some irregular heartbeats and we are hoping the cath will give us some answers about why she has had so many strokes in such a short time. 
     I apologize this is so long, but I wanted to make sure I gave updated and accurate information so you could continue to pray specifically for Bailey.  She talks about how many friends she must have because so many people are praying for her.Bailey has also asked that if friends from school read this they respect her privacy and know this is not anything to joke about.  I will try to update this as new information comes available.  Thank you again from the bottom of our hearts.
Jackie