Things are moving forward for Maddi right now. They are working to get her to the Neuro Trauma Unit (NTU). They didn't move her today because they need to have 24 hours with the drain clamped with her Cranial Pressure (ICP) staying below 10. They put her on her right side and her ICP went crazy. That meant that she was hurting. I am not surprised. If someone made me lay on my right side, right now I would want to get physical too!
They have her with very little sensory input. This is good news! What it means is that she is trying to make sense of her environment and any new thing creates confusion and gets her agitated. She "knows" or has a place for mom and dad's voices and it doesn't get her agitated, unless we are saying good-bye. So, they are asking to limit the visiting until she has had time to process a little bit more.
They have her on medication to help with the agitation. When she gets that way, it is like she is running a marathon and she is burning huge amounts of calories. She has already lost about 8 pounds, not that she had any to lose in the first place. So they want to prevent the long term agitation that comes from lots of new visitors.
It is better to have her stay calm without the drugs so when we have a conversation they ask us to go out of the room or to whisper. They have the lights turned off and ask us not to touch her for the time unless we are doing physical therapy stretches.
It may seem like the opposite of what you want to do. We want her brain working but working productively is different than confusion and agitation. She still likes the Harry Potter reading and the Book of Mormon still calms her. She does well with the light classical music that we are playing for her.
The not touching is really hard because it feels like that is all we can do for her right now. They say that this stage will pass and that will be one more stepping stone.
We are thinking; "fire whiskey" password for when we get to the NTU
Again, thanks to everyone who is helping and praying for us. It is so comforting to know how much Maddi is loved and cared about. Thanks to all who have brought meals and helped with the fundraiser and all the stories! There are not words to express how much your caring has helped us through so far.
They have her with very little sensory input. This is good news! What it means is that she is trying to make sense of her environment and any new thing creates confusion and gets her agitated. She "knows" or has a place for mom and dad's voices and it doesn't get her agitated, unless we are saying good-bye. So, they are asking to limit the visiting until she has had time to process a little bit more.
They have her on medication to help with the agitation. When she gets that way, it is like she is running a marathon and she is burning huge amounts of calories. She has already lost about 8 pounds, not that she had any to lose in the first place. So they want to prevent the long term agitation that comes from lots of new visitors.
It is better to have her stay calm without the drugs so when we have a conversation they ask us to go out of the room or to whisper. They have the lights turned off and ask us not to touch her for the time unless we are doing physical therapy stretches.It may seem like the opposite of what you want to do. We want her brain working but working productively is different than confusion and agitation. She still likes the Harry Potter reading and the Book of Mormon still calms her. She does well with the light classical music that we are playing for her.
The not touching is really hard because it feels like that is all we can do for her right now. They say that this stage will pass and that will be one more stepping stone.
We are thinking; "fire whiskey" password for when we get to the NTU
Again, thanks to everyone who is helping and praying for us. It is so comforting to know how much Maddi is loved and cared about. Thanks to all who have brought meals and helped with the fundraiser and all the stories! There are not words to express how much your caring has helped us through so far.
You guys are so strong. My gut reaction to not touching her would be to wrap her up in my arms and protect her. I'm sure you've been there in your mind already, so you are so strong. But you know you are doing what is best for Maddi. Any parent who knows thier child is hurting or confused your first instinct is to comfort and protect. So I can imagine how difficult it is for you. Your updates are something I look for as often as I can. Thank you so much from everyone who loves Maddi for these very special updates. No matter what, never forget how much we care!!
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I love Maddi and feel priveledged to spend time with her - not doing much, but just being there. John and Bev and their family are loved by many, Scott family, Sanders family and many others. We are grateful for tiny improvements. Our prayers are ever with them. Also thanks to the many of you whom have called me for information, very much appreciated. Re-connecting with loved ones is important and will be of benefit to Maddi, I am sure. Bette, Gma Scott
ReplyDeleteFasting and praying for her today. We send our love to Maddi and your sweet family. Thanks for keeping us updated... I have been checking it daily ;) Hope you can feel our love and some comfort.
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