2/20 8:10 pm

Ethan had a decent night. He rested well and so did I. I only woke up when Janice started getting testy. Ultimately she decided to continue doing her job, one time in a row.

I was so happy to see my RT friend today. He came to visit in our room and I was not there. I saw him in the hall and said hello and was greeted with a big, friendly and warm hello!  He told me not to get coffee because he was going to Starbucks. I told him I always keep his favorite soda in our refrigerator just in case he visits.

A short while later he arrived with snacks, coffee and a smoothie for Ethan. Wow! Above and beyond to make my day brighter. So nice! 

Ethan drank 8oz of the smoothie. He also ate some yogurt. This is especially good because his stomach is bound up has been off and he hasn’t been eating as much for the past day or so. Little input, because of little output.maybe bigger input will yield bigger output? Fingers crossed.

He took an early morning nap, then a mid morning nap. 

As the day went on, Ethan’s belly hurt and he was nauseus. “I hate this” he said. His face was sad. My face became sad too. “I am sorry you have to go through this.” Its a very tough thing to watch. I can see the dark circles under his eyes. He hasn’t eaten very well over the past 2 days. 

Around early afternoon he has a small amount by mouth that I luckily snuck in some calorie boost into it. Every little bit helps.

Mid afternoon, Ethan was fast asleep. I got a text to “look up”. I looked up and it was one of our favorites from 9 Tower that came to visit. She was one of Ethan’s pressure wound nurses.

We called her the “Butt Nurse” which I deemed a very important job detail to list on her resume. This title was given with love and gratitude as she helped manage the bed sore on Ethan’s rear. I woke Ethan up because I knew he would be pissed if he missed seeing her. 

He was so tired but was still able to smile and laugh at the conversation and it was a real boost for his mood (but I think secretly more of a boost for mine). 

“Do you want a hug?” He asked her. Of course she did.

I think it made both of their days.

Speaking of butts......The side effects we have been battling are embarrassing and indignant. Constapation is no joke!  It has been a “pressing” issue over the past several weeks. You should never take a nice and easy defecation for granted. Somewhere, someone is straining to the point I deemed it physical therapy due to the core workout.  Ethan is on many medications that bind him up as a side effect. His belly is so tense and distended. His body doesn’t know what to do. I was going to feed him coal because his guts are under such pressure, I was sure he would poop diamonds.

Can you imagine being a teenage boy pooping with your mom in the room? Not only that but, your toilet is shimmied under your booty while you are laying in bed? Your Mom right on the other side of the paper thin curtain, guarding the door against visitors, and ready incase you “needed help”. Yes you have to worry about strangers walking in and seeing your junk displayed. Ethan has discreet bathroom habits. He doesn’t like an audience. I thought heavily about not detailing this portion of our journey. But unfortunately, it is part of the journey. It has been 5 days without any procurement of “goods”. 

Many efforts went into the “producing” portion of the intestinal tract. Oral pills, solutions, probiotics....many attempts were made, many naps were taken.

After much, much work, a glorious movement came about, with a grand celebration afterwards. I called the mayor of NYC to see if we could shoot off some fireworks, but had to leave a message.  Never have I been so excited to see stool! It may go to the Smithsonian because I am pretty sure it was petrified, and worthy of being in a museum. 

Ethan didn’t want to go in the chair. It has been the first day in the past almost 3 weeks. “Why am I so tired?” He asked.  He has developed a bald spot on the back of his head from laying in bed so long. I gave him a comb over so it is not noticeable.

Paul texted Ethan at one point and asked him how he was doing.  Ethan replied “I am full of shit”. He then told me and I had a full out guffaw.

I told him how proud I was of him to have had a “shitty” day and still find humor in it. He was a real trooper. I am hoping his belly starts to feel better.

Janice shit the bed again. Really Janice? Come on, you have one job!

Even though today wasn’t great for Ethan, we had all these little bright spots that made today better. Tomorrow Ethan’s goal is to get in the chair and watch the race (and work on PT/OT).