4/12

So many phone calls were made today. I don’t even really like talking on the phone that much. It’s the price of being an adult I guess. I feel like an appointment scheduling ninja. 

We have made our kidney transplant evaluation appointment in June. This is a preliminary appointment and we aren’t looking for transplant right away. Ethan needs to get stronger first. But we will do it and get further along into the transplant process. That way, when we are ready, we don’t have to delay anything.

Today was disappointing at best. We got some road blocks trying to coordinate our discharge. We are currently working through them but man, the email, phone call crap circus I went through was so frustrating and disappointing. Learning how our lives will be different. Learning how our choices will be limited because of the fine line of pediatric and adult nephrology/ dialysis. Ethan and I sat on the edge of his bed this evening. I had my arm around him. We were both frustrated and tired of let downs around every corner. We shared a good cry. 

His face was crumpled up and he was sobbing under his breath. My eyes stung. We were both red in the face from just being over this whole ordeal and wanting to get home to everyone and everything we know and love.  We both were dropping silent F bombs which normally wouldn’t be tolerated but somehow our filthy language  comforted each other. Sometimes you just need to drop a F bomb. 

I pulled myself together and he sort of did too. We ate dinner quietly. I could feel the grips of hell on my shoulders. I can hear my hell’s laughter as it was getting the best of me. F bomb that! Hell...you better put an athletic sports cup on ....to soften the blow, buddy.

“Ethan, you know what a bright side was today?” He kept his eyes down and shook his head no.

“You showed me how far you can turn your neck in each direction.” A silly task for most people but Ethan has limited motion in his neck and he made huge progress.

“Your left arm only opened 130° And now it can open up 150°.”

We gave each other a hug. Because we both needed it. Hell hated that. We decided to eat our feelings and watch TV. I had jellybeans and Ethan had some Fritos. I would guess Hell hated that to, because we were enjoying ourselves. 

While today was frustrating, we are still making progress towards our discharge date! Ethan and I are going to bed early.