Morning Update

Good Morning, Glory! as I start out the day saying to Princess.  While our experience at this hospital has been really good, I would recommend that they have a more conducive chair for sleeping.  Somehow, a normal, padded, four legged chair isn't quite a Lazy Boy.  Anyway, that is not a complaint as what is important is that I have been able to be by Princess' side holding her hand.

Princess, seems to still be in the same shape as yesterday.  This was expected as she has been forced into her current state by meds.  The challenge yesterday as it was overnight was getting her blood levels- sodium, other electrolytes, urine, blood sugar, etc to all be at acceptable levels.  As of today, the only outlier that we think contributed to the awful event of yesterday morning was incredibly low sodium levels...

Due to the hasty and urgent response that we had to do while in the ER and ICU, we have not been able to share much of our unique past and complexity of Princess' seizures.  Additionally, we are working with a Neuro that has never met us; therefore, he is doing a lot of things from square one with some insight to our 11 year journey.

Please pray for my time with him this morning that we can be on the same page.  As many of you who have followed our journey, we have made significant progress and I feel that some of the proactive steps of the team here at the hospital, are negating some of our progress.  Thus, hopefully the Doctor and I can get more time to connect as he was only able to get about 15 minutes in the ER of her 11 year journey.

Please also pray that with Day 2 we can have consistency.  I have already been informed that we will not have the same wonderful sweet nurse that we had yesterday.  Therefore, we will meet someone new and I hope that we can work together.

Some of you might be wondering about Princess and her CBD or Hemp Oil.  So far, in the hospital it has not been an issue at all.  Praise the Lord as we were concerned as this is our first hospital trip in over two years (since starting the CBD).  The amazing thing to think about is that she has had the best control of her situation to present and has reduced her pharmaceutical anti-seizure drugs by 95% and 86%.  Truly incredible.  Again, a prayer would be that our current situation would not takeaway from the dramatic and huge progress that has been made.  Fortunately, while I have been able to block some things that they are wishing to do, I also realize that there are some things that need to be done in order to provide Princess with an opportunity to "come back."

So, prayer requests:

• Transition of staff this morning- that we can keep our same nurse, or at least the new one will be an advocate and will work with us
• Conversation with the Dr now that Princess is stable and we look to try to bring her off the ventilator later today (possibly).
• For Princess to not be treated as a new patient and recreate the wheel.  Rather that the team here can come alongside and recognize the lengthy experience we have.
• Princess would be comfortable (as much as she can) in her current state.  That we would see glimpses of Princess come about today- pretty tough to not have her responding!
• Continued improvement with her blood levels, as well as coordination of our plan with the hospital's plan- MOST IMPORTANTLY- GOD'S PLAN would take precedence.  
• While I appreciate your prayers for my strength, please keep Princess' mother in your prayers.  She desparately pleas with the Lord for Princess' healing and I know that she could use the support and encouragement, too.

Lastly, to those who have called, texted, emailed, messaged, visited...I truly felt energized in reading all your messages late last night and reading even more this morning.  You cannot know just how much you have helped.  To those who have come and just sat or brought food, it truly has been needed.  I am adamant about not leaving Princess' side and so your generosity has been sustaining!  Thank you for your continued love and support.