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😬12/10 8:45 pm

 This afternoon has been a bit of a series of frustrating wins.  What does that mean?  Well the paralysis drug has been lifted. Ethan is not in any pain. Ethan is not uncomfortable. Wins! But.... Ethan is frustrated and mad.

He has his restraints on to keep his arms down. He thinks he can bust through them. I asked him “ do you think you are going to break these?” He shook his head yes.  He continues to fight them all afternoon. He in the process has almost pulled out an A line. Luckily his nurse and I moved at the speed of light. I tackled the arm while the nurse retapped it very quickly. It was funny because I could see it happening and anticipated it.  I said to the nurse very calmly, in a steady, dry monotone voice “ There's an issue I think you need to address sooner than later. This is my panic voice.” I have learned that some people don’t recognize when I am panicking and I have to tell them.

We addressed the issue. It was like tackling a big dog at work or a sedated bear. He is just mad as fire. He is punching the bed. Wiggling as much as he can and there is no reasoning with him. He is an angry, drunk toddler with no reasoning skills present.

I did notice the left side does have more deficits than it did. He isn’t really moving his left leg. His hand is not nearly moving as much but he does have some squeeze. His left eyelid, he can’t close it.  The stroke did some damage but I am not sure how much or what the repercussions will be.

He pulled off his pulse ox and is trying desperately to remove the wound vac on his leg. He was almost successful. I had to put a pillow over it so he can’t get to it. The pillow pisses him off and he tries to move it.

He is also trying to pull himself up.  With restraints on. He has the ICU delirium working pretty good.  I can’t step away for a second. I am exhausted.

Basically it is me telling him he can’t get up. He is in ICU because of his transplant. His job is to relax and breathe and everything is going well. Over and over and over. For several hours. He can’t remember and that is not his fault. I am getting frustrated because I just want them to give him something to sleep but he is freakishly immune like a savage beast.

He is not understanding what is happening and is flipping out. More medicine? They already gave it. This freight train is no match for modern medicine.

I am frustrated and exhausted. My feet hurt and I haven’t eaten dinner. There is no end in sight. I am so very thankful for these moments. I know there was a period of time I wasn’t sure I was going to get them. This could very well be a long night.



Comments

  1. I’m sorry hun. I’m sorry for you and him. He doesn’t know what’s going on and I’m sure he’s frustrated. I hope you get to rest tonight.

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  2. Thinking of you all and I hope you have a restful night and some food!

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  3. We can only hope this part of the process (the effect of coming off of the paralysis med) won’t last for long. I hope you get to eat and you both get some restful sleep tonight.

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  4. Patti no words can take away the pain and fear you are
    experiencing .
    We hope you can ask a team
    member to be very close by
    or even in the room with you
    during the night...
    That doesn’t sound
    unreasonable to me!!!




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  5. Patti, I'm so sorry. I know this is exhausting. I can't say I know how tough this particular road is, but I hear it in your words. They echo through the room.

    Is there any way we can help? Is there someone else that could be in NYC with you if even just for moral support? Someone who can stay at the apartment and be a fence-sitter, waiting for you to vent? I know it probably sounds odd, but I think you could use a human presence that loves you like you're doing for Ethan.

    Remember that Mary had Susanna and Joanna and Mary Magdalene... But then we always have God and I'm putting you and Ethan in his tender care multiple times a day. I hope you see this in little acts of kindness, in smiles, in the way you and the staff work together. God bless you, dear lady. Absolutely bless you!

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