Ethan was very unsettled last night. They also had to suction his lungs a lot. He now has frank blood coming out. That is not good. His heparin dose was checked and all the work we have done coming down on the vent has been reversed. I am a bit disappointed and frustrated but understand this is his road. This is his pothole. I just hate to watch him go through these set backs. I just feel sad.
We as parents are supposed to make things better for our kids and I can’t right now. I know we are where we are supposed to be and he is getting the best care, blah blah blah. I just feel sad for Ethan. The critical care team was considering increasing his sedatives and possibly putting him back on the paralytic, so we will see where the day takes us.
He is still holding onto a couple liters of extra fluid. Of course that is in and outside his lungs. It makes it harder for him.
I was able to get a couple hours of sleep in a row last night. I still feel foggy headed though. My eyes are tired and I just feel like complaining and maybe saying the “f” word a few times.
So as I wait for today to unfold, a planner without a plan, (which is my own private hell) feeling down, I ask myself what is the bright side?
Hmmmm.....
Ethan’s nurse last night was very caring. A few times I woke up and she was just holding Ethan’s hand. Just holding his hand while he rested.
They have got Ethan sedated well enough now that he is resting.
I am just going to go back to bed and restart this day over in a little while. Maybe my attitude will change. I have no wind in my sails. I am sitting motionless on the lake.
I hope you and Ethan can feel the love we all have for all 4 of you. It is OK to feel sad and frustrated. We all feel the same way at times. Sleep will help that. I hope that you can get a little. Love you both.
ReplyDeleteIt is so hard for us planners not to be able to plan. I'm sad and sorry about this setback. I hear you. You're doing a great job being there for him and working to find things to be grateful for. It's harder when you are tired. Or hungry. So make sure you eat even if you don't want to! Hoping you guys pop up out of this pothole fast! (Gun it, Ethan!!!)
ReplyDelete💛❤💛❤💛❤💛❤💛
Rest and self care for you is so important, too, Patti. It is tremendously frustrating, to not be able to control the situation. I'm watching these giant bluish purple clouds moving swiftly off the lake from the NW right now - perhaps they are picking up enough strength to put wind back in those sails. Prayers continue. ❤
ReplyDeleteOur prayers, thoughts and love are holding on to you and Ethan.
ReplyDeleteWe realize how sad and helpless you feel . It’s Okay for you to
feel all those things and more!
Sleepless nights , sadness and fear add to your burden. Anger comes as well.
You have held it in for so
long! Letting Your emotions come out is healthy.
You will Restart your
Engine and Ethan will be
back on the road with you!!
Let God Help You
You will Find Him
In strange and different ways..
🙏🙏❤️
Lord Hear Our Prayers
It’s ok to be frustrated. I feel the same way. You get so excited he is moving forward that you put ur guard down a little bit. I’m more frustrated for him. I feel sad for him that he can’t catch a break. Rest up as you can and stay positive. I to had no idea the scenic route was so long!
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