11/30 3:45

So this catheter lab trip is proving to be more of a big deal than originally anticipated. Ethan's arterial access is not good due to the size of the catheter that they used. When discussing with the doctor that will be doing both procedures, he mentioned removing the existing arterial line and replacing it with a bigger one to do the biopsy.  They would then replace the bigger tube with a smaller tube and feed the wire that measures pressures this lung and heart pressures. They would then leave that one in place.

I asked the doctor "Why? If you are going to be doing biopsies every week for a while, why not leave in the bigger line? It seems invasive to be zinging in and zinging out all these lines, not to mention the increased incidence with infection each time something is going in and out of the artery."

"Good point. (long pause) That's a great idea." He said. We chatted more and then I had to sign that paperwork that places his life in their hands and if they screw up, I can't blame them. Let's be clear, I do trust them.  I trust they want him to feel better and they will do what it takes to get him there. 

I felt like I just did something good for Ethan.  I feel so helpless. Any little thing to make something easier for him.  

I do have an uneasy feeling about this procedure. He is on blood thinners, they are messing with an artery.  They can't zap him. Ethan needs to cooperate.

So It seems this pneumonia is kicking his butt a bit. It looks to me like he is developing a rash.  His nurse didn't seem to think so.  I took a picture of his skin and will take another one tonight just to compare. I would love to be wrong. 

The infectious disease team came in to assess his pneumonia and review the plan for treating it. They were treating him like Typhoid Mary. They poked him with a stick from outside the room.  Ha ha not really, but that would be something I could see an infectious disease team doing.

He is so gurgle-y. His shoulders are heaving a little with each breath he is taking. His cough hurts to listen to.  Nasty coughs like that hurt in general, but add in the chest they just sawed in half and put back together, holy crap!  I can't imagine.  I asked anesthesia to do a little house keeping in his lungs while he is out.  Do a little vacuuming and remove all the junk in there.  

The neurology team came in and tried to assess him.  He was out.  They were shouting at him to try to wake him up. Nope.  Ethan probably hated that and if he was able to respond he wouldn't give them the satisfaction.

The Little Speed Shop sent over some videos for Ethan to listen to.  They are all car noises that Ethan would love.  He didn't have much reaction to them, but he is on multiple pain killers and sedation so he is just zonked.  I am saving them for when he is a little more with it.

The traveling shit show came and wheeled Ethan away. I call it the shit show because they have to coordinate all his medications, monitoring devices, emergency drugs, ventilator,  anesthesiologist, nurses, they need to do blood draws oh my.  I noticed they had the wrong patient binder, which I pointed to and said  "Um that is not our last name." It's always good to have someone looking at these things.  They have checks and balances but still every little bit of help can make a difference.

He should be coming back in 2-3 hours.  I hope they get the information they need.  I do go into this afternoon with a weird sense of doom.  Maybe it is a coping skill? I hope it is. My stomach hurts.

The nurse snapped this picture of me as I watched them wheel my first born away.