😊 1/7 5:55 pm

Ethan was taken off dialysis for a “kidney challenge”. That sounds bad.  He was given diuretics to see how well his kidneys are doing after the past few days of rest. He will be put back on dialysis tonight but are establishing a baseline. He still has a lot of fluid to come off. He was able to make almost 300 ml of his own so he won that challenge.  His prize is he goes back on dialysis.

Ethan looks so different. He is so skinny. He has contour to his face. His upper right arm I can almost get my thumb and middle finger around it. His ankles I can fit my thumb and middle finger around. His shoulders are pronounced an boney. His calves have disappeared and left behind prominent boney remnants. He is going to need to be fattened up.

The diarrhea virus is gone and I can do laundry again.Yeah! I have 2 loads in as we speak. 

I spoke to Psych today. During rounds they discussed pulling off the paralytic. I sort of panicked but didn’t understand why. I used my time on the stairs to examine why (it was a good use of time) if was feeling nervous about this.  One of the nurses had mentioned to me at some point that along with delirium, sometimes it can be accompanied by anger/frustration. Totally understandable. I am nervous about that.  I am also guarded because everytime they lift the paralytic, Ethan crashes and burns. I just don’t want to lose the progress we have made.

My question for psych was, what are things I can do or say to help with the delirium, anger and frustration? How long should I expect it to last? The short answer was lots of repeating. Keeping things simple when explaining things. Lots and lots of patience.  I feel like I am preparing for another battle. It’s kind of like pregnancy was for me.  Super awful while going through it but knowing there was a prize at the end. My prize will be to get Ethan through it.

He was exhausting during delirium. Then they brought in the babysitter and I was in an introverted dilemma. I wanted the help but not trapped with the person making small talk, my nemesis. 

Ethan has developed a fever again so more blood and respiratory cultures. They are making sure they miss nothing.  

I did 10 flights of stairs. Each flight is 20 steps. That was fun in a mask. But I think it helps. No one is on the stairs so I don’t have to worry about watching my back, or getting cold. If I can get out of bed in the morning I will try to push for more.

Everyone is so nice and supportive here. One of the doctors came in and asked what she could do for me. I though that was so nice. I told her I didn’t feel like I needed anything. But I would love if the bathrooms didn’t smell like pee and gross toilet smell. She was going to talk to someone about it and escalate it. That would be a wonderful gift.