3/12

Last night Ethan went to the bathroom and it measured to be 30 ml of urine. Holy crap! Wow!  We high fived but then talked about how his kidney is likely bunk and we would still have to do the fistula surgery. We would have to wait until after the teams discussed his case and everyone agreed it was ok to move forward and do. But Monday would be the day.

I woke Ethan up this morning so he could attend his class remotely. We talked last night and I asked him if he thought it was too soon. He thought he could handle it. So I woke him up. His sedation medication really kicks his butt in the morning. This is weird because he is a morning person. It took an hour to get him ready for class. He had to get dressed, brush his teeth, wash his face, get his blood drawn, get up and move to the computer, take 1000 pills (slightly exaggerating) and make it to class. Who knew life used to be so simple.

I hung a sign on the door that read “Do Not Disturb, Ethan is in Class”. What do you know....someone knocked on the door and asked “is now a good time?” Really? I immediately made a face like I smelled something bad.  This is my “annoyed” face or “stink” face as I like to call it. Luckily I was wearing a mask.I briefly thought about freaking out and yelling at her “state your emergency!” And then stare blankly at her and follow it up with “there must be some sort of emergency if you came in despite our sign.” However, I told her “no, Ethan is at class.” Eyeroll.

After class Ethan went to the bathroom and made another 20 ml of urine. Holy crap!  Within a 12 hour period, we are at 50 ml’s which has been our 3-4 day average.  Was it a fluke?  Was his kidney trying to tell us something? I needed to tell renal because I am now second guessing my thought process about the fistula surgery based on this new information.

After class Ethan laid on the couch and napped for a couple hours. Rounds happened. They told me everyone signed off on the fistula surgery and it should be a go for Monday. I let everyone know about the 50 ml’s of urine. He still should be making about 500 ml’s of urine at least. So he still isn’t near a normal amount but it is a change.

The renal team wasn’t at rounds. They stopped by right after and I told them our news. Everyone was delighted. I told them my hesitation about the fistula. I asked if it was wrong to cancel the surgery on Monday and see what happens over the weekend.

We talked about that we were going to skip a dialysis treatment tomorrow and let him go through the weekend until Monday. That is a bit scary because if his urine output was a fluke, that fluid has to go somewhere if he’s not peeing whether it’s his feet, lungs or wherever.

We are going to challenge his kidneys again with diuretics. So this will be the real test this weekend. We are also going to ultrasound the kidney to see if the size has changed at all. Do or die kidney....wake up and make pee.

Ethan woke up from his nap and was just blah. He was quiet. He was zoning and just not right. I made him get in the wheel chair and I bailed out of the room with him out to the courtyard before we were bothered by anyone.

We walked all around the courtyard with the warm sun on our faces. We didn’t really talk much. After we walked around, we sat quietly in the sun. I talked about how I thought the people sitting in the grass were crazy because they were going to get ticks. I also commented on how loud everything was with the humming of the vents, police and ambulance sirens, people chatting and horns honking. I couldn’t wait for our peaceful yard.

Ethan looked at me and said “my life is never going to be the same.” He was choking back tears. “No, it’s not.” I said. “I just want to go home.” He said.

We shifted the conversation to what we were looking forward to most about going home. How life wasn’t going to be the same and how we accept our challenges head on. At one point I said “We are going to figure it out. We are going to work around the dialysis, around the frequent NYC trips. And we are going to live the crap out of our lives.”  He nodded unconvincingly but I know he is hearing it and I know it will get better.

We came in to eat lunch before PT. I had Ethan ready to go when PT car guy showed up. The three of us walked down the hall to the elevators. “Oops, I forgot the walker.” I said. Then I quickly blurted out. “We don’t need it, Ethan is just going to walk today.”

Walk is what Ethan did, with minimal assistance. 

He walked up stairs and down stairs and all around the courtyard. He was tired. When PT was over I made him take a ride through the courtyard again for more sunshine therapy.  PT seemed to lift his spirits.

We came back to the room and he gave me 10 ml’s more of urine. What?????

He got to enjoy some Ben and Jerry’s peanut butter cup and dialysis started. The ultrasound lady came in but couldn’t get the ultrasound machine past the dialysis machine. So she was going to come back later.

Endocrine came in and let me know the cyst on Ethan’s pituitary gland in his brain was a benign (not cancer) mass called a microadenoma, which is doctor language for “small growth”.  Where is my doctor translation app?

90% of these hormones are just there for decoration and don’t do anything. It’s like the pituitary gland’s trophy wife. 10% of them are juvenile delinquents and cause trouble quietly when no one is looking. These little drunk beasts are sly. Those 10% sneaky ones can produce their own hormones in addition to the pituitary gland and goof up a lot of things within the hormone peer group. Ethan will be having some blood tests to make sure that his hormones aren’t running amok and having riots in some other part of his body. Either way, it isn’t even making it to the worry plate yet.

We also found out insurance FINALLY approved us to go out of network as well as continue dialysis out of network, so we can move forward with the transfer to rehab soon. I will work on condensing our things this weekend an packing up again. One step closer to getting this boy home. He’s got his life to live and will have his girlfriend at his side, driving in his car down the road probably to dialysis.....sounds romantic.

I tried to have the nurse hunt down ultrasound and collect things for bath. Ultrasound wasn’t responded and I told the nurse we would reschedule for tomorrow and we do not want an ultrasound at midnight again.

Ethan fell asleep the last bit of dialysis. Along with his blood it sucks the life out of him. It makes him so tired. Tired like I was last night trying to type. 

We are getting closer to coming home every day.