❤️ 1/17 7:10 am

Well, Janice shit the bed last night, again. They decided to try the diuretic challenge early. This included getting a high dose of diuretics to see if he makes an appropriate amount of urine. His kidney has been rested for a bit. He did not respond to the challenge the way they wanted. He did not produce as much urine as they wanted. They will rest his kidney longer and try again later.

Ethan had more sedation lifted (a very small adjustment) and he is a little more alert. He is a bit confused. He is not delirious anymore. He is able to communicate a little bit. He wants his phone. We are back to that. He can’t see with all the drops and ointment we are putting in his eyes.  I took a picture of the password screen on my phone. When he went to touch the screen, he wasn’t even close. His depth perception is way off. 

He is getting frustrated with that. I remind him that he is on lots of drugs that are going to good his brain up a bit. Also, he has eye ointment that makes everything blurry.

Ethan’s movements are more controlled. He isn’t as jolty. We give him “free time” unrestrained. He uses his free time to touch his chest or scratch his nose. He is very gentle with each movement. Sometimes he gets sneaky and tries to take off the oxygen sensor. 

This morning after xray, I got my most beautiful gift. Ethan had a sad look on his face and he was squeezing his eyes shut. I walked up to the bed, leaned in close to him and said “good morning”. Ethan was unrestrained because his nurse and I were going to turn him.  

He opened his eyes and looked at me. “Hi” I said. He ever so delicately reached up and pulled my mask down. When he saw it was me, he slowly reached his arm toward me and put his arm around my neck. I got my first hug. Of course tears pouring out of my face.

“Hi buddy, you are ok.  You are going to be ok. You are doing so awesome!” We hugged for a good two minutes.

His nurse and I stood next to him as he pointed at different things in the room and we told him what they did or why they were there. 

We started to give him choices. Do you want to face the window or the door? Do you want your brace on or off. We gave him choices that didn’t really matter but also gave him power. This was a useful tool when the kids were smaller. 

  *parenting tip* -This one is Epic

Give your kids as many useless choices as you can. It makes them feel good to make choices. You can also influence the choice if you need to. Do you want a peanut butter and jelly sandwich or a dog poop sandwich? Oh good, peanut butter and jelly. I have all the ingredients right here. 

Just make one choice slightly less favorable. Be willing to commit. If dog poop sandwich is chosen, you better have the ingredients. 

Ethan reached up and gave me another hug. I loved every second. It made every moment of hardship over the past several weeks worth it. That was my bright spot for a week.

He also wanted the TV on. He is moving a bit more. This is so good. He is lifting his head off the pillow.  The nurse said he tried to get off the bed last night during his bath. He threw a leg over the side of the bed. She asked him if he was leaving and he shook his head “yes”. Breathing tube in, Hooke up to dialysis, many pumps and cords. He was going to Peace out.

He had one of his pulmonary hypertension medications turned off this morning. One less pump. Yeah. 

We will see what the day holds for us. My heart is warm and happy. I got TWO hugs from my boy.