6/7

Ethan woke up this morning, lip swollen, face long. He hurts. I know that look. He’s tough and keeps it together.  He likes to have me close to do his salt water rinse because it hurts him so bad he is afraid he will pass out from the pain.

After his salt water rinse he sat down. 

“I can see that you are frustrated.” I said.  I feel so helpless. There is nothing I can do to make the pain go away. With this simple phrase, he began talking.

He talked about how frustrated he is. He talked about how a simple task like eating, is consuming his thoughts. He knows he has to, he wants to, but the thought of eating and drinking is just overwhelming.

The two of us had a small cry together. We both talked about how this isn’t fair. He has been through enough. It is one thing after another.

We then decided he was going to kick his hell in the balls again. I made him an omelet. It had some sausage, spinach and cheese in it. I added some powder to it to add calories and carbohydrates. He needs the calories as much as possible.

He did his magic mouthwash, which is also painful, and tried to numb the hell out of his mouth.

He proceeded to eat his omelet, despite it still hurting. I was so proud of him.

This morning was full of coordinating more refills of several medications, contacting and organizing our visit to NYC so we know what and where we are doing and going.

Also I had to call in some help managing our hospital bills we are getting but I don’t think they were billed correctly. Always a fun chore.

We had dialysis later in the day today because of a scheduling issue. No big deal. We arrived when we were supposed to and I learned how to do dialysis as if we were traveling. I had to pretend I was mature and not giggle when the word “sack” was used. Eye roll. 

I am a terrible reader. I swear I have a mental block while processing words. Basically if I have to read about an alarm the machine is having, God help Ethan. I must need a subscription to Sweet Pickles. I remember those commercials in the 80’s “sweet Pickles is great!” The little girl would say. I don’t care for reading much.

This evening we watched Bravo Night on Ethan’s schools website. Bravo night is when awards and scholarships are handed out. Ethan won a couple scholarships. Woo hoo! He applied for the scholarships while he was in the hospital and/or rehab facility.

We are trying a few new things with Ethan’s mouth this evening. I hope it works.

My bright spot was my BFF dialysis nurse. He can always make Ethan smile. Love it.