We finally got to go in an see him around 2 pm. We could see everyone running back and forth working on things for him. You had to know Mason wasn't going to take it easy on them.
His blood pressure is a little high but they are treating him with meds and expect him to respon to them soon.
His main issue is his airway as always. They want to extubate him asap but they want his ENT Dr there when they do it and nobody knows when the Dr will get there.
He's really fighting the tube and so far the pain meds aren't enough to keep him comfortable. They are walking a fine line between giving him enough pain meds to make him pain free and not giving too much to so he's too sleepy to get off the breathing machine. As hard as it is to see him suffer
in the long run it will be so much better to get him off sooner rather than later.
I've told them I don't want them to make any decisions about extubating him without me there and they have agreed to have us at the beside to speak with the Dr before anything is changed.
When we got to the room the nurse, who is very nice, gave us the 5 minuet only visit speech. I told her that was not OK with us. She tried to tell me that she might be able to let us stay longer once he extubated and I asked to explain to me how I was interfering with the machines in any way.
She didn't have any answer except that it was their policy. I told her I thought the policy was ridiculous.
We stayed an hour.
Then they got an admit and then we gladly stepped out.
While we were there I answered 20 or so different questions about Mason's anatomy, history, reactions, etc. All which the nurse admitted they needed to know and made their job of taking care of Mason so much easier and a positive outcome so much more likely.
But they don't want me at his bedside. Make any sense to you?
George and I have discussed it and while we are going to try and keep an open mind and see how it goes if the visiting policy stays as restrictive as they say they are going to make it we will not be bringing Mason back here for anything other than minor treatment.
Why would I want to bring my child to a place that wants to keep me away from my child.
Why would anyone?
It's so hard to see him in pain and not be with him, but to be near him, to know that we are so much closer to getting him home and to a normal life span.
What else really matters?
2 weeks ago