Day 4 Fish Oil study

Today has been up and down for us....

She seemed sleepy this morning when we got here.  But she was cooperative in OT.  As the therapist was leaving she mentioned that she saw some nystagmus movement of her eyes.  I didn't see it and it didn't bother me much right then....  Sam has nystagmus and Sarah does too a little.  It's a rapid eye movement side to side and it is associated with vision loss, disturbance or a eye problem. 

Then her nurse and I were doing somethings and I saw it and it was a violent movement from mid line of the eye to the left side.  The nurse took one look at me and I said 'go get the doctor"  My legs started shaking.  I didn't know if she was having a seizure or what!  I even thought maybe it was something good....who knows?  The nystagmus that Sam has is where his eye goes across they eye from side to side, not from the mid line to the side.  So the doctor was right outside and came in and saw some movement.  Then neurology came in and sent in a person to do an EEG.  Thankfully she did the eye movement when the machine was on so it caught it on video and they could look at how her brain was firing during the episodes.  During the test, she had movement from the mid line of the eye to the left and then later to the right but never all the way across the eye.  I also called Dr Sear's assistant and told him what was going on. 

We got the results back and there was no sign of seizure activity.  So no one knows exactly what it means...it could be good or it could be not good...we don't know.  Neurology said it was not an usual occurrence when someone is waking up from a coma.   Of course I looked it up.  Obviously I know a bit about it from an eye condition side, but one site I found did say it could be from a brain injury occurring later in life.  One of my readers, the one who got me in touch with Dr Sears in the first place told me that a child she is very close to had the same reaction coming out of a coma two different times from two different problems. 

At this point, I think we are leaning towards it is a good thing, it is a new thing that is for sure....

Something else that is new today is still no storming!  She did a bath, OT, Music Therapy, face cleaning (by me that she hates) then all the residents from neurology (I finally told them to stop touching her) then an EEG with all the electrodes and then a hair washing....ALL without storming!!!  To me that is a MIRACLE!  You have NO idea how we have tip-toed around trying not to upset her and get her into a storm!  There is no way she could have handled all that last week!!!  Even Monday morning before the Fish Oil was started, she had a storm with a heart rate over 200 because she had therapy and then I cleaned her face.  That was one of the worst ones she had had in a couple of weeks but she hasn't had any since then!!!!  Monday her arms were stuck in the air like she was saluting and they were shaking.  It was horrible!  but she hasn't had one since!

After supper I came back over and found her slumped in bed.  This is the 2nd time today she has done that and the FIRST times she has ever been in a new postilion since the accident!!!  She was upset and breathing hard and her heart rate was 130 but as soon as we repositioned her, it went immediately down to below a 100!  I have to admit when I walked in and she was slumped over so bad and yelled for the nurses and they came running!  I didn't know what had happened and I wasn't going to take a chance!!!  So now for the first time they are going to have to watch her for movement when we aren't here!!!!  WOOHOO!!!!!!!!!!!!!


Then I tried her on a Popsicle and she sucked it, swallowed, licked it and I think even tried to bite at it:)   She had about 1/4 of one.  She seemed to be getting tired of it and I didn't want to take any chance of her aspirating!!!

do you love this picture or what?????????

 

I'm so glad I came back over, I was feeling bad, worried about what the nystagmus really meant and I had a bad headache but I just felt I needed to check on her again.  She rewarded me for coming over!!!!!!  She looks  just like LaLa!!!!!!