3/5 10:55 pm

 This morning was a shit storm. We woke up. Ethan used the bathroom which is so exciting still to have in our room, produced 10 ml of urine, AMAZING!!!! 

We got him on the couch, brushed teeth and hair. Then the doctor came to visit. Then OT came to help Ethan take his first shower. She brought some fun signs for his walker. How fun!

EKG cut in line and did their test first. Echo showed up and was turned away until after OT was done. Echo lady was pissed and created drama that was later described as “typical behavior” from that individual. Finally, getting Ethan ready to go into the shower and then rounds happened. Cardiology wanted to do an exam but Ethan was unavailable. They were cool and just decided to come back later.

We divided and conquered. I hopped on rounds and OT did the shower. While rounds and shower were going on the dialysis guy showed up and needed access to the bathroom to set up all the dialysis equipment. He was turned away until the shower was over.

The shower ended, rounds ended, echo lady came back, and dialysis man came back. Echo lady had a fit because dialysis man needed to run some hose on the floor and echo lady was afraid she would be trapped in. Dialysis assured her she wouldn’t get trapped, but she kept talking about it. Really? 

Then she tried to make small talk. Ugh!  The worst! Small talk with an introvert is equivalent to pouring boiling water in their eye balls. It’s so painful. I did try but then found that I just didn’t have the energy.

PT came and Ethan wasn’t feeling so hot today. He was tired. He didn’t really want to do PT. The goal was two times around the unit. He made it around one time. It was difficult for him. He was sore. He only went that one time around and felt disappointed that he didn’t have it in him to go again.

Dialysis came and went. Echo lady left and Ethan and I were alone, for the first time 4 hours. He wanted to eat as he had slept through breakfast. He asked for an egg sandwich from the cafe down stairs.

I went down and bought the egg sandwich with the most calories in it. While I was waiting, I ran into one of Ethan’s wound management doctors. I thought about an opening line of “remember when I caught you taking pictures of my kid’s butt?”  I was going to say it loud so everyone would look, but then decided that probably was not the best way to start the conversation. And for informational purposes, she did take picture of a wound near his butt but never OF his butt. I said “hello” instead. We started chatting and she passed along some good advice for Ethan. 

    “Recovery is like the stock market. Some days are better than others. It’s the trend you have to pay attention to. The upward trend yields the highest results.” It makes perfect sense. He can’t kick ass every day. By not kicking ass today by his standards means he actually did kick ass....if that makes sense.

I was waiting for the elevator and a mom of a baby that was in the room next door to Ethan for several weeks said hello. She and her baby have either been next to us or close to us on each floor we have been on. They have moved with us at every move we have done. I would wave to her on 9 tower but we never really chatted because we were always in our respective rooms.

When I was on the 11 th floor her and I had a lengthy conversation where we introduced ourselves.  She speaks Yiddish and English. She has a little bit of an accent that I personally love. Her baby has been in the hospital for a few months as well.

Today, I saw her down in the lobby. She said she had something to share with me. She explained in was Sabbath and that she hired someone to stay with her baby to celebrate. She was absolutely shocked to find out I stay with Ethan at the hospital all the time. She was provided some food by an organization for Sabbath but she was not going to eat it. She gave it to Ethan and I. It was so nice. There was soup, jello, fruit, bread, chicken with dipping sauces, and kugel. It was my first experience with kugel and it was pretty good.  There were a few desserts as well.  It was so kind of her. Ethan and I were so excited to try all the food. It was really good too. It was a cultural lesson for us.

Ethan had his dialysis and they pulled of 2.2 liters. He has another session tomorrow. Tomorrow will likely be 3 hours and not 4. He gets so wiped out from it.

We ate dinner. We then played “are you going to vomit? Or was that a burp?” It’s the newest game show at New York Presbyterian Hospital. Turns out, you can win the game by always having a bucket accessible.

We watched an episode or two of a show we started watching together, which is pretty funny and it makes us laugh.  It’s called Norsemen. It is about a Viking village in the 8 th century. It mixes Viking behavior with civil behavior. It is quite funny.  

Ethan then had a few episodes of vomiting and developed a slight fever. Hopefully it is just from the excitement of the day and nothing more.

My bright spot today was when I went to drop off paperwork on 11 central, I spoke with one of the doctors that told me he can’t even set foot in 9Tower without getting asked about Ethan which is so cute.