Ethan’s Journey

Today I was feeling a little bit tired, run down and crampy. My appetite was non-existent. I napped ALOT. The doctor said these days would happen. My kidney values are elevated until my body regulates and I will have days like these. They won’t even check my levels until 6 months after surgery, because they will be elevated. As the day went on, I felt a little better…just super tired.  Ethan had a good day. He has been working on another YouTube video.  I was sad to see Betty White died. She was a wonderful talent.  Cheers to hoping 2022 is a little bit kinder to everyone.

This morning I spent the majority of the morning (after going to the lab) calling insurance as well as the hospital finance department to resolve some unpaid claims from over a year ago. So frustrating. This process is not for the mentally weak. I swear things are just as hard now as they were a year ago, just in a different way. Ethan is becoming increasingly more upset, angry and frustrated with his situation. Today, the hematologist shared the plan for the daily injections to start up again as the days get closer to his stent removal and heart biopsy. They don’t want him bleeding out during the procedure.  He. Was. Pissed. The hematologist spent 50 minutes with us coming up with a plan that is safe. The injections seem to be the only way even though they are well aware it is traumatizing to him. I tried listing every oral possibility I could think of and each one was eliminated because of interference from one of the drugs he is on or it is toxic to the kidney. I really tried hard.

Paul and Avery left today. We had fun with them. It was sad to see them go, but nice to know we will be home in a few short weeks. I miss them already. Paul makes me laugh. I miss him. Avery is a delight and I miss her too. She and I played games on their commute home.  Ethan had a tough afternoon emotionally. He feels like he is in jail and hates that he still has to do school work. He is just overall pretty miserable with the situation. This means I also had a rough afternoon emotionally. We talked about how he has the choice of feeling better and he just needs to choose therapy. Again, he is refusing.  Luckily his friend reached out to him and they spent time laughing and talking on the phone and it meant the world to him. I was beside myself not knowing how to fix it and spent time on the phone with my friend. Friend therapy was so important for us both today. Tomorrow is lab work and hematology appointment. We will develop a plan for Ethan’s Coumadin for when he gets his stent rem

Today we went to Central Park. We explored the southern half-ish of it. We entered through Strawberyy fields. We walked around The Central Park Lake and went to the Bethesda Terrace. We walked underneath the bridge and there was a beautiful underground area with ceramic tiles on the ceiling and paintings on the stone walls. There were two men, one playing the cello and the other playing the violin. They were playing Christmas music until this dumbass guy walked through with his boom box playing some horrible song and the loudest setting. This guy looked disturbed. What a jerk to interrupt the live music with his crap music. We saw bridges and arches and felt like we were walking in nature. We got home and watched the movie Don’t Look Up.  It was scary how easy this story could be true. One day closer…..

I remember when my kids were little the silly cartoons they would watch. My perverse mind could take something “innocent” and I would quietly snicker and share a laugh over it with Paul. This morning as we entered the hospital, we saw our favorite security guard, who didn’t even care where we were going and happily gave us a visitor’s pass. He is so nice to us. We get to the “check in” where they put a bracelet on Ethan and send him to the lab. While we were waiting, there was a cartoon on with dogs in it.  The kid dogs say “let’s play tickle crabs” the kid dogs were all excited to play along with the dad dog. The kid dogs proceeded to tickle the dad and crawl all on top of them. The dad dog was saying “if only I had someone to love to get rid of these tickle crabs” and “I went to the beach an caught tickle crabs”. Who is writing this???????? I asked Ethan if he had tickle crabs. We both were quietly snickering as there was a small child in the room.  I texted Paul and Avery to let the

We had another day of rest. We watched tv and cleaned. Ethan worked on schoolwork and is bummed he has so much more to do. Ethan is really struggling with the fact that the last two years have set him back so far. He has had to be mostly quarantined for the past two years. He is feeling ripped off that he has had so many medical issues. “What is the bright side?” I asked.  He didn’t want to play that game and wallowing was what he wanted to do. I pointed out that we have 3 weeks left. Then his training wheels are off and he can hit the ground running. “Kick hell in the balls”. I pointed out the goals he has set for himself. Wanting to finish his car project, work and take classes. He didn’t really want to hear it. That’s ok, sometimes we all need a good pity party. He deserves that. These last 3 weeks will be a struggle for him. I can see the big picture.  We also saw some more Christmas lights. I enjoy that.

Today was undoubtedly a better than Christmas last year. Ethan was bummed today. He saw all the people having a great Christmas on social media and it made him feel trapped and bummed about being here.  I get it. Life over the past 2 years has been anything than normal. Ethan loves the holidays and traditions. So it has been a big let down for him. It was pretty much just a Saturday for us. He just wants to go home and start his life as a healthy kid. The bright side of being in NYC is that it limits our exposure to people and covid is going nuts. Ethan is immunosuppressed and covid could really cause a life threatening issue for him. So limiting our exposure has been a good thing. I am hoping that his mood lightens when Paul and Avery arrive and we can have our family Christmas. Ethan and I watched true crime stories. We watched the Ted Bundy story and the Night stalker story. We ended the night with a light tv show, the “Press Your Luck” game show. “Big money, big money, no whammy’s,