I was watching the news this morning and low and behold snow is coming...does that mean it's a snow day?
To update what's going on here in our break from the outside world, Ivey is sick. We came here with seizures. Got here. Not one single seizure to be recorded during the video EEG, which is still running, and landed with an infection. Go figure. She loves to keep everyone on their toes. My toes, however, are tired. She has been working us all.
The past two nights during the deep morning witching hours, have been long and hard. My sweet pea has been spiking a terrible fever. She is miserable. Blood work is back indicating that she is indeed fighting an infection. Now we are waiting on other tests to try and figure out exactly what she is fighting. Her chest x-ray did look good. They have started her on a pretty strong antibiotic. Unfortunately, her little bottom is already blistering where it makes her poop so much. That in itself is painful for her. For now that is about all I know.
Oh almost forgot. Her breathing is not as labored as it has been for the past two days. She is on her normal breathing treatments with a little cpt.
As always, the nurses and staff, and Ivey's doctors are incredible. Ivey's sweet day nurses have worked hard and her night nurses have been super. Right now a nursing student is sitting in the room with her so that I could run down to the lobby, get coffee, something to eat and go look at the sunshine for the first time all week. I have left the room here and there to wash a load of laundry, wander through the gift shop for a break, and down to the caferteria, but this is so nice being able to sit down to a different brighter view for a moment. I told her she was my early birthday present. I don't think I could ask for any thing better, except for the obvious.
Oh, and right now I am not sure when Ivey/we will come home. Definately not today.
Thank you all for thinking about Ivey.
Confessions from the mind of this sleep deprived mom navigating the world of complex medical needs, deafblindness, and special education. And y'all, it may not always be pretty, but it's real, and it's always for the love of Ivey.
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5 comments:
We're praying for sweet Ivey. I hope that you get some answers soon. Those pictures with Ivey and her dad are gorgeous! Hang in there :)
Thinking of you Gwen, and hoping and praying that things improve and both of you can be home soon. Wishing you a peaceful birthday tomorrow, full of good news about Ivey. HUGS!
Thinking of you... heres hoping that they work out what is wrong, and she s home soon. x
Gwen, so many of us can learn so much from you. When the storm comes, you stay the course. God is doing a mighty work through you! We are praying for Ivey and for your family. We hope your birthday has many special moments! Let us know if we can do anything for any of you.
Gwen, you continue to amaze me...you are truly an exam of perservance...love... and transparency...
It is an honor to know you
God Bless you and your family
I will continue to pray for you all
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