Friday, May 28, 2010

Ok, I'll back up...

I have had several people say, "wait a minute, we missed something!" I guess when we are living this 24/7, we assume all is clear to others. Thanks to those who asked for more clarification and to those who are asking for more details. If the miracle we are living, will help the faith of others, we will continue to update the blog. Please know that progress is slow and will be--I will explain in a minute--and there are some things that unless you see it, it's hard to imagine. When I write what has happened and then reread it, I keep thinking, that doesn't really describe what is happening. I wish I was a better writer but if you read with your heart, it won't matter. And if you aren't reading all this with your heart, well, then you probably aren't reading it. So

I will back up and explain a few things. (Please if I don't make something clear and you think it will help you and/or others, please let us know.) So on Day 14, Wednesday, we were under the impression that we would be in the PICU for another 2-3 days. Then before we could hardly breathe, they took Shannon done for another CT scan, it looked good so the doctors removed her EVD tube (the drain), they took out some IVs, did a few other things and it seemed from no where came this blue sticky note to our nurse. She smiled up at us and said, 'you are to be on the floor at 12:15 (about 15 minutes later)'! The floor meant to move from PICU to what I HAD THOUGHT was Rehab. There was no messing around after that! I think we were in such a state of shock and so mentally unprepared that we didn't get to celebrate in the joy of moving on! It was strange the feelings I had as we left. We had come to feel such security in the PICU and the nurse that moved us, we just love and all of a sudden we were gone and put into a new environment. After we had a chance to settle in and figure out the new routine, we realized what a big step Shannon has made and we celebrate and thank Heavenly Father for again, watching over us and allowing the miracle to continue.
So she moved, not to Rehab but to the Neuroscience Trauma Unit (NTU). That is more like a hospital but the rooms are set up for families to stay with the patient. We will remain on the NTU until she is no longer in need of medical treatment. Then she is released to Rehab. However, she doesn't move then, she just changes which doctors are in charge of her. But Rehab isn't going to let a minute waste. They had already been in briefly over at the PICU but now they are getting really serious. Her medical needs will come first and then the Rehab but they work so well together that it seems seamless.
I was asked if Shannon was really awake. The answer is yes and no. She comes awake off and on but she is very groggy still. On Sunday, she will receive her last doses of ativan and methidone. She will then be only on Tylenol for pain. However, any one with a traumatic brain injury (TBI) is going to be sleepy and tired for a long time!! There is a chance that there is still some pentibaritol in her system. And then if you think about laying in a bed for over 2 weeks without eating much of anything, you know it's going to take a long time to get over that. I have to keep reminding myself of all of that when she is just so exhausted after just a little bit of work. So she is not very awake and when she is, it is for short periods of time.

We continue to learn more and more about TBIs. Udell mentioned the big book/manual that they gave to us. But so far, I am learning more from the doctors and therapists that take time to explain things in more detail. For example, we were told that after a TBI, the brain has to relearn most everything. For Shannon to be able to do all she is at this point is another miracle that we didn't even realize. Most TBI's when they first begin to wake up are very agitated and aggressive. Shannon hasn't been. She was annoyed by all the tubes on her and so she was always wanting to pull them off or out! That again is another stage. We have been watching her like hawks to be sure she doesn't pull something out. Well, Wednesday night, I was sitting right next to her, watching her and somehow she got past me and pulled out the feeding tube. I really felt bad because that meant she had to go downstairs to xray to have them put it back in. Since then she has pulled it out a couple more times but we were able to stop her before she got more than an inch out. You have to watch her constantly, for she is always trying something new.
Shannon worked with the speech therapist today. We thought she was going to be able to retake the swallow test today but we were mistaken. It sure made Shannon sad.
I will finish this post tomorrow. It has been a long 2 1/2 weeks and tonight will be my first night back in my own bed!

1 comment:

  1. i just might have to come and tape her hands down to the side of the bed....Shan, knock it off you! :o) I loved seeing some of your family at your house when I took pictures of Tonya, cant wait to give you - Pheobe - a big hug. I am grateful for your willingness to open your heart, mind, frustration and hope with us. I consider it a privledge to be apart of your "family" circle. Love you!