4/14

2:00 am the power goes out. This means that the fan turns off. Anyone who sleeps with a fan knows that this is an automatic wake up call as well as devestating. Then it is quiet until the generator turns on and everything beeps. The power comes back on and the beds start talking. Yes talking in a ladies voice. But the beds were offset a little so one started talking before the other. They were both saying the same thing but out of sync with one another so it was hard to understand. 

Then an hour later our roommate had a bowel movement in his diaper. He’s a 23 year old man. The nurses came in with their inside voices. Which doesn’t always happen but these folks were good. They tried to be quiet with their mouths. But the had to turn the lights on, open the packet to get the diaper out, crinkle crinkle crinkle, drop the sides on the bed with a loud clunk clunk. Let’s not mention the toxic, noxious fumes that infiltrate the room and assault your sense of smell. In and out of the bathroom they traipse (which is on our side of the room as they have to walk through our side to get to his side) opening and closing the garbage can with a crinkle and a thud from the lid. 

I was so thankful that Lady Loud had gone home yesterday. At least we had a reprieve from her music. Each song on average is 15 minutes long. I like to say 15 minutes of torture.

This.....this is why I am going crazy here. I am just not sleeping properly. So then that is finished. I lay there trying to go back to sleep and can’t. About every 3 minutes the roommate makes gurgling noises. He can’t help it. I can’t even be upset with him. I actually really like talking to him because no matter what I say.....he points to his food because he wants to eat. I actually thought about incorporating this technique into my life somehow.  I haven’t suffered from a traumatic brain injury and somehow feel it wouldn’t be as acceptable. I have grown kind of fond of him and have learned his favorite tv channels and movies. I put his shades up for him when him mom is gone. I feel so sorry for him.

 So with 30 minutes before your alarm goes off, do you try to go back to sleep? Or do you lay there with your eyes wide open staring at the ceiling?  

With the exception of the power going out, this happens almost nightly. 

So I was not able to get that extra 30 minutes. I got up and got Ethan and myself ready. The ride was only about 10 minutes late which is basically on time. Right before we left I ran and grabbed a coffee. When I was making my coffee I thought about how much I love coffee. It smells good. It warms your hands. It warms your belly. It makes me feel good after I drink it. As I watched it brew I was just smiling and staring at it. Practically drooling. I took a deep breath and a sip. It was very hot.

The driver basically ripped my heart out and ran it over with her car multiple times when she told me I could not bring my precious coffee in her car. I felt like a drug addict that was having their heroine flushed down the toilet in front of them. “You can’t bring your coffee in the car because you can’t lower your mask due to Covid.” I said a silent f-bomb. “Can I just hold it in the car?” I know I seemed like a lunatic.  I was grasping not to part with my coffee. “No.” Ugh! 

“You can chug it though.” Really? That was her suggestion? Who chugs coffee? I need the entire coffee experience I can’t just chug it.....so I tried to chug it but it was too hot. I didn’t want the stalactites to form on the roof of my mouth. I told my coffee that I loved it and I was sorry I couldn’t drink it today. It may have been slightly dramatic.  I then considered using tooth picks to hold my eyelids open for the car ride.

Meanwhile during my coffee downward spiral, Ethan was nervous and anxious. He actually had reason. We had a delightful ride into the city despite feeling under caffeinated.

We made it in time. We did have to wait actually. Ethan’s pet peeve is waiting. He actually was working himself up as the wait got longer. I was trying to give him a massage. He was loosing it. Finally they came and whisked him away. 

I finally went and got some coffee and said hello to some old friends. Ahhhh.  I do miss our favorite people. 

Ethan’s pressure numbers came back good. We have to wait for the biopsy results for a few days. After the procedure (which he chose to do without anesthesia) he had to lay flat an hour and then slightly sitting for an hour.  He was very twitchy and jittery. That seemed to increase and so did his emotions.

I felt like kind of a jerk because I don’t really know what I am supposed to be doing or where we are going. I know we have a certain amount of boxes that need to be checked and only a certain amount of time to do them.

Go to the second floor...they told me. Ok, I get on the with Ethan (the Sasquatch I had put up was now gone). The doors close....there’s no second floor option. So we went to the first floor. Then went back up to the third floor. We went to a different elevator that has more access to floors. No second floor. 

We walked down a hall and came to a room on the third floor. “You are in the right spot. What the....at least we found where we were supposed to be.

As we picked away at the things we needed to do....we both got a hug from Butt nurse.....yeah!!!! That made the day worthwhile in itself.

Ethan got to the echo and was so jittery he was practically jumping off the table. Almost like he was being electrocuted repeatedly. He was upset and out of sorts. I began to wonder why stress affects him in this way. 

We were able to squeeze a last minute surgeon appointment in so he could look at the fistula. It looks good...it may need a little work but it may not. Time will tell.

Overall we had a great day as far as staying on time. We made it back to New Jersey an hour early for dialysis. They took us in and Ethan started having a fit. He was twitching and emotional.  “Ethan....today is your first day off methadone. That is why you feel like this...duh!” I couldn’t believe I hadn’t put two and two together. Of course it makes perfect sense. He is so sensitive to weans. I am so glad we kicked that nasty medication to the curb.

He decided to order Chinese. It is a high sodium count but after what Ethan went through today....we are eating Chinese.

Ethan would describe this day as absolutely horrific. He has every right to. The day itself was a lot. Add in a narcotic wean and it was down right torture.

The good news in that this day is almost over. I have had one of those you are so tired your eyeballs ache headaches. I am ready to make today a distant memory and am so glad it is over.