12/7 11:45 am

So X-ray has come and gone, the perfusion team has come and gone. The surgical team has come and gone. They changed the dressing on his incision and that continues to look fantastic.

I have deviated back to telling Ethan complicated lies to make him stop asking for stuff. This is a parenting trick I have exercised many times. It really works.  The key is to make it believable and say it with confidence. My lie for today: “The magnetics in the iPhone interact with the titanium gears in the pump. So we have to keep your iPhone off.” Total made up bullpoop. But it seems to be working.  I will be writing a book with more nonsense parenting tips later. I am not sure what the title shall be.  I also will focus on the fact that I get a lot of my parenting tips from animals as well as that I have absolutely no credentials. I am sure it will be a success.

Rounds had 17 people in attendance today.  Ethan's xrays are continuing to get better. If you look at the pictures, I have labeled them before and after. Keep in mind the “after” xrays actually show he now has two lungs.

His white blood cell count has gone down to 14. Last week it was at 31 so this is a huge improvement.  He is going to continue getting antibiotics for a while to make sure the pneumonia is eliminated.  I requested a visit from the ophthalmology department to assess his eyes.  The tissue around his eyes are swollen and so red.  They are concerned that some medications could have a negative effect on the pressures of his eyes.

Jesney sent me a video today that she made of her and Ethan. It is their 7 month anniversary today. It was such an awesome video. It made me realize how much I miss Ethan and his vibrancy and how I have just become accustomed to his blank face and occasional movements. It also reminded me of how much fun it was to have Jesney with us on our camping trips this past summer. She has really gotten a good view of how odd we all are and yet she still keeps coming back.

It is part of the journey to deal with these visions of my broken kid.  Some of these visions have scarred me.  No one should have to see their child in this state, yet people do it everyday.  It will make the reward of actually being able to see him without sedation so much greater.