12/3 6:00 pm

 

Look at all the people in Ethan’s room. This was my view after I picked up my lunch.

This afternoon has been a series of crap shoots. Ethan has had a lot of excitement and little rest. His cardiologist, I don’t think has left the floor. Ethan’s ICU doctor has set up camp right outside his door.  There has been a steady stream of people in and out of the room all day. Luckily, I was proactive and applied Vaseline to the door way so everyone could slip in and out without getting stuck.

Echos, EKG’s, xrays oh my. More moves and then countermoves. I do have to say they are fine tuning his healing process. The medical team celebrates the littlest achievements. You can here the news that Ethan is keeping his oxygen level at 90, make its way down the hall.  It is said with so much excitement too, like someone just won the lottery.

Ethan’s main cardiologist is done with his shift for the week. They work a week then have a week off. His new cardiologist is the one we had the week prior and knows his case as well. He came in and told me I was stuck with him for the next week. I pointed at Ethan and said “you are stuck with this kid for a week and he is not being easy.”  “I have heard ALLLLLLL about it.” He said.

He told me that this is not the typical road for a transplant kid. He also said we have a very long road ahead of us and to plan on being here for at least another two months maybe more. (Bummer, but we will do what we have to do.) 

I wonder if it is frowned upon to sneak Ferguson in the room with me. I am missing the dogs.  I know they won’t let Paul or Avery in, but Ferguson is only 5 pounds. Would they even notice?

We did have a bit of good news this afternoon. Ethan was on a medication to help reduce the pressure in his lungs. It was being fed into his leg. The medication wasn’t working like they had hoped. After brain storming they decided to put the medication through a different port because the path the medication was taking, it was getting filtered through the kidneys before actually making it to the lungs. They moved the port closer to the lungs and just like that, it started working. Trial and error. It was a win.

Today they were working on making sure his oxygen level to his brain, match that in his legs.  His legs were getting more oxygen because of ECMO than his collapsed lung full of junk. (These are all medical terms I just know it.)

So for one day in a row, we had a bit of progress. Not much, but a little bit. I will grab onto that and not let go. All these little steps will get us to the finish line.