3-4

All I can say is SHAME on the dialysis nurse. She told me they got off 2 liters. I was so excited. Then at rounds this morning they started discussing the amount of fluid taken off and it didn’t match up to what I was told.  I corrected them. Mostly because I knew what I heard and I wanted to type the sentence “I corrected them.” They all looked at me like I was crazy. They had pity smiles behind this masks I just know it. The one doctor looked at his notes and said “I am going to read what the note that dialysis made in the computer.” Well crap! This can’t be good.  Come on!! 

“The official amount recorded was that they were able to surpass their goal of 2 liters and remove 2.5 liters.” Oh!  This is amazing! This is really good. His body is tolerating the dialysis. His blood pressures are remaining stable. I guess I should apologize to and thank the dialysis nurse.  Here. Was thinking she was a liar, but she actually gave us the gift of celebrating twice.  There is something to be said about celebrating...it’s contagious.

Another thing we celebrated first thing this morning was Ethan got up and out of bed with just me. He walked with just a walker to the couch.  He ate his breakfast and had to use the bathroom. He was able to sit his butt on a real toilet. The first time since November. It was a milestone.  He made some urine too. 10 ml of beautiful urine. Wow! I was elated! Did a dance and wverything.

PT/OT came and Ethan walked around the new floor TWO times. Twice! He blew PT/OT away. Such progress with one day off from PT/OT. 

Ethan spent the afternoon sitting and laying on the couch watching tv and meeting with all the specialists. At one point one specialist came in after another and he said “can I just get a minute to eat my damn lunch?” I laughed.

I spent the afternoon filling out paperwork, learning about Medicaid, taking care of some loose ends with our room, catching up on emails... basically had to be an adult. I seriously want to open a vending machine for adult beverages in the hospital. Insert you license, credit card and get your adult beverage. Seems simple.

This evening was Low key. Ethan is homesick.  I am homesick. We just want to go home but know we have a job to do before we can.  Ethan misses everyone. Through tears we talked about things he missed and thinks we took for granted. I was glad he was letting it out. One of the things that stabs me right in the heart is seeing my kids upset. Not upset for stupid stuff where you are glad they learned the hard way (sorry Ethan and Avery) but upset about things beyond our control. Tonight I had a proper heart stabbing as I watched and listened to Ethan being homesick and nothing I could say or do helped.  I just hugged him. I was glad I could. There was a time when I wasn’t sure we were going to get this far.

Ethan said goodnight to me as he choked away his tears. I just let mine soak my pillow and blur my vision.  I hate he has to go through this hardship amongst others. He misses the people he loves and his life prior to transplant. He will get there. He will get there stronger than ever. 

My weird bright spot was that Ethan opened up and shared his feelings. I can’t imagine the amount of silent struggling he has gone through. At least he shared his feelings.