I feel like I am about to go crazy! Lizzie has had about 7 total hours of sleep since Tuesday Afternoon at 2 when she came out from under getting her last MRI. As parents, we thing the absolute best thing for her recovery would be to get her some sleep. They gave her melatonin and 1/2 of an adult sized Ambien to help her sleep at about 10. She was totally and completely exhausted! I knew she would sleep and that was comforting. They told us they had to check her vital signs every 4 hours so I figured she would sleep until around 2 at least. They are so concerned about her pulling her tube out of her head that they have a full time CNA assigned to her. That was nice because I was able to sleep better than if I would have been on my own. The CNA felt her diaper at midnight and saw that it was wet and decided to change her diaper. AAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I could just scream! Seriously, 2 hours of sleep with a wet diaper would have been just fine. Instead, she has been up since midnight and has been totally crazy saying all sorts of weird things, yelling at her friends, yelling at me, and saying all sorts of potty talk(I must admit the potty talk is kind of funny). She goes off like Ralphie in The Christmas Story. She has called her nurses "Butt-butt" and "Stink-Butts" and it is hard not to laugh. But she is really miserable.
You can tell she is just so exhausted and could use a day and a half of sleep. It is so hard to see her sit and shake and have such a hard time with grabbing things. She keeps grabbing imaginary things and putting them in her mouth. It is just challenging to not see her make as much progress as we had hoped.
I don't want to make this a negative post, it just feels good to express frustration. There are still good things that happen every day. Lizzie has always been our most sensitive to little scratches. There have been many times she has "needed" a band aid for scrapes that you can't even see. And yet, now when the nurses prick her finger and even draw blood from some veins today she didn't cry. She is toughening up and that is good to see. Yesterday we went into physical therapy and they have a plastic bowling ball and pins and she walked about 30 steps when she had previously taken about 5. She had a really fun time bowling. Another positive was that I kicked Carol out of the room at about 8:45 and for the first time she was able to get a really good nights sleep.
We have also continued to have a lot of people help us with prayer and offers to help. They are much appreciated. If you are reading this we have one simple, but much needed request. Please pray specifically that Lizzie can sleep. That is our biggest concern right now.
I think we will probably be here till at least Wednesday. I wouldn't be surprised if we are here maybe even another week and a half or so. It seems like she has such a long way to go and needs to make so much additional progress. So, thank you for your prayers in her behalf and please continue to pray that she can progress and get sleep.
Lizzie's quote of the day, "I hate you! I don't even like you! Get out of here!" Carol: "Who are you talking to?" Lizzie, "George Washington!"
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8 comments:
Ben, I don't think it is a negative post. I think that considering everything you guys are going through and have had to go through, YOU Guys ARE Doing GREAT!!!! You and Carol are an inspritation. Everyone one has to vent and let out their frustation and I think it is totally fine to do that on your blog, because heaven only knows how any one else would handle these things. WE will definately pray for sleep for Lizzie. Stay strong, know that we are thinking and praying for you guys. love you guys, Jen and Mike.
While it makes me really sad that she can't sleep. That last quote was awesome! I will keep her in my prayers.
Not a negative post at all! I think you guys are doing an amazing job! Hang in there! I sure will be praying for Lizzie and sleep! I can't even begin to imagine the frusturations you are feeling and Lizzie too! Know you are loved!
You guys are awesome. We all continue to pray for all of you. I was at the temple yesterday and wanted to put each of your names on the roll, but couldn't remember your son's name...the Spirit whispered "Spencer" and I knew that was it! I am here to run errands, tend kids, or do whatever you need...please let us help!!! I love your blogs each day and we will all continue praying for all of you. Shirlee Lalli
We feel like we have taken a couple of steps back today. Lizzie seems to be having a rough day. She is really looking hard to her left side and rolling her eyes to the left too. They said the opposite side of where the surgery happened will be affected worse than the side they did on the surgery. But she really is out of it and we are having a tough day. We are worried about her. Please continue to pray for her. Thanks, Ben
We are all worried about her :( I know that prayers will be answered and we continue to pray for Lizzy and your family :) I pray for sleep and quick progress.... Love you Guys.. Wade Julie and boys...:)
Will keep praying for little Lizzie and the rest of your fam. Thinking about you guys- you are handling this so well. Let us know how we can help.
Ben and Carol, know that here in Ohio (and in West Virginia) we're thinking of you and keeping you all in our prayers. Ben, your post wasn't negative at all. You need to vent and we all know that and we're here to listen. Just keep writing and we'll keep praying!
Love you all, cousin Kim and Aunt Jackie
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