Wednesday, October 30, 2013

Wed 10/30/13 – Feeling sick on the Light rail

This morning – Wednesday 10/30/13 Breck called me – stating that she didn’t feel good on the light rail.  She was very worried that she was going to have a seizure and didn’t know what to do.  I got off the phone and started calling her doctor – Dr. Schusse to see if Breck could take her emergency meds herself prior to a seizure.  I once again was only able to leave a message with one of the nurses.  Between my mother and my sister Erika we made sure that Breck was talking to someone the entire time. 

My Mom had Breck write on a piece of paper her name and that she has seizures along with my phone number and my moms cell number just in case something happened so hopefully someone could help her if needed. 

I called my cousin Trevor as I had remembered that he worked near to where Breck would be getting off the light rail before walking to the school.  He said he would be happy to meet Breck as I figured he could reach her before me.  Right after that my mom reminded me that Trevor no longer works in Phoenix but was in fact in Mesa at the time I called him.  I felt so bad – I tried to get him to not come but he wouldn’t hear of it – he was on his way and even had called a previous co-worker Cindy who could meet Breck. 

Cindy met Breck at the light rail and took her into a conference room where she could lie down.  Cindy commented to Breck how blue her lips were.  Breck was shaking so bad she could hardly hold her phone.  Breck also mentioned that people were very nervous around her on the light rail.  I am sure they figured her as someone on drugs!

Trevor met us at his old office and helped me find Breck.  We (my mom and I) then immediately took her to Dr. Schusse office.  We layed Breck down on the floor and they soon took her back to a room.  Luckily Dr. Schusse and Dr. Varma just happened to be in the office today. 

We are not exactly sure what was happening:
1.       – It could have been a start of a seizure that the meds were stopping but not completely controlling.  This is about normal for the course – we have yet to go more than 5 months with any medicine.  They seem to work in the beginning and then Breck gets resistant to them.
2.       – It could have been an anxiety attack due to the last few days.  Although she has never experienced this before.  Dr Schusse reassured Breck that it would be perfectly normal for her to feel the way she was feeling.
3.       We found out she had a fever of 100.6 and she could be sick with the chills and flu.  They reassured me that the fever had nothing to do with her brain.

What to do?
Dr. Schusse suggested adding her emergency drug to her nightly routine for a couple weeks or month. This would cover where her current meds are falling short.  This would be .5mg of Clonazepam.  Breck can also take clonazepam if she feels like a seizure is coming – this med also would help with any anxiety if that is needed.  She can have a max of 1.5mg per day – no more.

Results from Hospital Stay
Next Dr Schusse said “ So you two understand that Breck did have several strokes due to the specialized WADA?”  We both said “What?  No.”  We explained what we had been told when leaving the hospital.  She and Dr. Varma both stated that we received mis-information from the hospital!  She DID have strokes.  None of the testing showed any evidence of any artery spasms.  They were both shocked to hear Breck was diagnosed with a seizure upon discharge of the hospital.  Dr. Varma claimed conspiracy theory – due to lack of care at the first ER visit and due to the fact that the hospital didn’t want to do all the testing required for a stroke victim.  Dr. Schusse and Dr. Varma both mentioned their personal feelings against the ER Dr. Lauer.  This is why I have been so detailed in my previous posts.  I feel I need to have as much information saved and documented as possible. 

Phyiscal Evaluation today
Dr. Varma did the physical Neurological assessment today.  Breck did fine – with feeling in her limbs, words and eye sight.  The only concern was when Dr. Varma asked her to subtract 7 from 100.  Almost in tears Breck could hardly do that.  Then he continued with “ and 7 less than 93?” and that was hard for Breck.  Dr. Varma “ and 7 less than that?”  Breck missed it by one.  Frustrated Breck said “ I know I should know this!  This is really hard?!”  Dr. Varma noted to Dr. Schusse maybe some deficit to the math area of the Brain… He did not elaborate if it was due to the stroke or seizures.  Dr. Schusse said something about how it could be due to her seizure meds too.  Keep in mind this is an Honor student who completed Trig in high school while having seizures and no meds.  It was a little uncomfortable for me to watch as her mom.  I am sure it was hard for my Mom too!  Very concerning to us. 

WADA Test Results
Dr. Schusse said Breck did great on the WADA test.  She scored 15 out 16 – which signifies that there are no issues with memory loss for the hippocampus surgery.  She is very much a candidate and can move forward with that.  There was still a question as to whether more testing should be done to determine if there are any other areas of the brain with seizure activity. This test would be the probes inserted into the deep tissue.  We discussed our concern of the past complications so far and said that we are not sure the risk is worth the information at this time.

LAST OF ALL: COMMITTEE MEETING TODAY
Dr. Schusse said the committee would be meeting today – this afternoon and that she would relay our concerns as well.  She said she would call right after to let us know what the committee thinks is the best option for Breck at this point.  She made sure Breck still understood in the end it was her decision – no matter what she wanted to do. 

Breck stated at this time that is surgery is still an option she would like to pursue.

There is probably more that I am missing.  Super tired tonight.  Things become a jumble.  I invite Breck and / or my mother to clarify and add anything. This is why I always try to have others with us.  It helps a lot. 

Thanks for all your prayers of concern for us this last week.  It was a full week.  We still held on to counting our blessings – the main one being the fact that Breck seems to be ok as far as physical movement and eye sight.  We will be keeping a close eye on her for sure.


Hugs and smiles - 

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