2/24 10:10 pm

Ethan woke up in the middle of the night needing to use the bed pan. This turned into being on the bed pan and becoming nauseous. Then came the wretching and vomiting. For almost 2 hours. “I am shocked” said NO ONE. 

Imagine laying in your bed as a teenage boy, on a bed pan that is soiled, but it can’t be changed because any movement will initiate a wretching fit, that will drive the plastic edges of the bed pan into your fragile skin. Sounds fun right?

After an hour and a half of trial and error, and 4 different medications later, the nausea and vomiting stopped and we were able to take care of “business”. I do have to get out of the habit of cleaning Ethan’s rear and upon completion, stating “there, clean enough to eat off of.” I say it because I humor myself with saying it, but it has fueled some interesting looks from many nurses. 

Ethan was frustrated and upset as anyone in his spot would be. “I am doing all the right things.” He said as he was racking his brain as to what else we can do to stop this. The defeat was thick in his voice. I wanted to shake him and say do you even know how sick you were????

“I hate this. I just want to go home.  When can we go home?” We talked about the amount of success he has had so far and how we are closer to going home every day. How small daily successes are adding up to be big successes. I tucked him in, his ankles and elbows padded, his bed sore area properly pillowed and non-weight bearing and his cozy blanket up to his chin.

I am getting tired after almost a weeks worth of these frustrating events in the middle of the night.

I woke up this morning and stared at Ethan’s thin face as he slept. His eyes look sunken with dark circles underneath them. He was a sleeping fragile ball of determination.  He woke up like a tornado. He started requesting his things to make him comfortable.he wanted to do his spirometer first thing. He was ready to kick today’s ass.

Breakfast came. I prepared myself for nausea to start around 8 am and it didn’t. What? He started to eat. He then proceeded to eat his French toast, string cheese, yogurt, drink ensure, orange juice, apple slices...what the..... I could practically hear the Rocky theme song playing in my head. This was especially victorious because he is down to 85 pounds as of today.

We were visited by the nephrology team. They told me they were happy with Ethan’s fluid balance. They did say that he could only have 500 ml of fluid between his medications and what he took by mouth. He had already used 450 ml by the time they had announced their new guideline.  This meant Ethan couldn’t drink for the rest of the day. He was pissed.

Ethan had previously already decided that he wanted to have a Frosty from Wendy’s with his dinner. He was devastated. I walked out in the hall, closed the door so Ethan wouldn’t hear me and said to the nurse, “a frosty isn’t considered a liquid right?” I was shaking my head yes so that maybe she would agree with me. My technique failed as she started to say it was in fact considered a liquid. I started to debate that it was practically ice cream and did they consider ice cream a liquid. Then I word vomited my real thoughts “ Ethan wants a frosty with his dinner tonight. I am going to buy him one. It would really be nice if it is not considered a liquid. But if it is, I am just warning you, he will go over his fluid goal for today.” His nurse then said “you know, it IS practically ice cream.  We won’t count it.” I wanted to hug her. 

PT/OT came and he did as much as he could with stupid Janice-talk about a ball and chain... he was able to sit up unassisted, do sit to stands assisted, leaning forwards and back, marches, stands to almost sits...but then standing up again.  He got hot. He was out of breath. 

He had determination written all over his face!

Sitting up all by himself. This is progress.

He then asked if his OT was going to “get out the freakin bubbles?”  She laughed her butt off. She had showed him a new bubble machine earlier that was COVID friendly, but she hadn’t gotten it out at all.  He exercised his hands trying to pop the bubbles as well as “blow” the bubbles.

Rounds happened. We discussed a plan moving forward. Janice was going to come down tomorrow afternoon. (However, I lobbied for her to come in the morning so he could do some walking with PT/OT). So Janice is coming down in the morning. She is going to stay down and Ethan will try HD dialysis on Friday. 

We are considering this a trial. It may or may not work. Ethan may not be ready and will have to go back on Janice. Only time and Ethan will dictate this for us. The only concern the team had, was they still thought his blood pressures were low.  They adjusted his dose to a higher level. They decided to try another wean on his withdrawal medication. Which my anxiety button went off. Great, I thought.....more vomiting and wretching. 

It was time to order Wendy’s. Ethan ordered chicken nuggets, French fries and a frosty (which is ice cream and not liquids, just to be clear). As he was eating he started to wretch. In between wretches,  he said “all I looked forward to today was enjoying my frosty”. His nurse swooped in like a ninja and had the medicine right in her pocket. She gave it pretty quickly and the entire episode was over with in 10 minutes. He finished the entire Frosty and then asked for fruit.

We did our normal routine with bath, vitamin e on the scars and lotion. I tucked him in and he fell fast asleep.

I gave our new nurse the low down on what is happening and she agreed to have all the drugs in her pocket as soon as she could get her hands on them.  I showed her where we kept the bed pan and puke bucket. So we are prepared for what tonight has prepared for us. Hoping it is a restful night.