10/19/22

Ethan said this morning “My creatinine is going to be high. I already know it. How do they expect me to stay hydrated while traveling?” This has been a common argument he has had. I responded with “ You chose not to drink in the car yesterday. YOU made that choice. I stopped a couple times to pee. I have to drink or I don’t feel well. You could have had as much to drink as you wanted to.”

I want him to realize that he is in control. He likes to blame and not take responsibility. It is never his fault. I don’t think he has a valid argument at all. He was quiet after that. It gets exhausting hearing the same immature argument every time. I want him to point the finger at himself. I do think he has hindered himself in many ways. I always say to him “No one can help you, if you don’t help yourself”.

I always maintained Ethan was a pain in my ass. This is still true to this day. As much as I complain about it, I am glad he is still here.

City life is NOT for me. There are so many unfavorable smells for my hound dog nose. The Uber car was a mix of bad cologne and oily human. I then wondered how many butts had been on the seat and immediately regretted that thought. 🤮 DON’T. TOUCH.ANYTHING!

The cologne smell was so overwhelming that it was trapped in my mask for a few minutes after exiting the vehicle. I can’t imagine that it attracts any women….I want to run far, far away.

Ethan shared that his trigger for these appointments is when they start asking him medical questions and about his medications. I told him that he needs to learn the answers just in case something happens to me. He did well answering the questions.

I then pulled out Ethan’s pills. They told me to bring them to his appointment. I couldn’t remember if I sent them with him or not. I pulled them out so I would remember to ask. This invoked rage in Ethan, complete with swearing at me. He talks down to me like I am stupid. Why would I ever do something so dumb? I told him it was NOT ok to talk to me like that. Little episodes like this have been happening since about the kidney transplant. It’s frustrating. I never see it coming either. I usually always maintain my cool, and respond firmly. 

Of course it pisses me off too. Seriously, I have gladly given up so much to be by his side this whole journey. I understand he feels most comfortable with me…blah blah blah…kids are most comfortable around those they love…..but I don’t deserve it and I certainly will not accept it. He was quiet after I snapped at him. It’s like the mom dog biting the puppy. Yes, I do get some of my parenting skills from animals. 

Of course they did not take his pills back like he had told me they wouldn’t.

They took him back. They are going though a vein in his neck to get to the right side and an artery in his wrist to get to the left side of his heart. His fistula complicated the artery access, but the doctor said he would still look at it as a possibility, it would likely not be chosen.

I skedaddled over to the donor center for my bloodwork. My choices were to either drive to Buffalo to the closest lab associated with NYC offices OR get blood done while I was in NYC. Luckily NYC would actually save me time…so I chose to have it done during Ethan’s biopsy.

To my surprise, the person drawing my blood was Ethan’s previous EKG guy. This kind man would come to Ethan’s room daily for months, doing his EKG. Once Ethan was awake, he would get Ethan to talk to him. Over those months, I learned about how he traveled by subway when his daughter was very young, for 2 hours, from work to school, so he could give his daughter a better life. He would do his homework on the subway. He did this for a year and a half while working full-time. His daughter is now in the 6 th grade.

He actually did Ethan’s EKG in July. He recognized me once I said his name. Of course these people became my family while I was there. They supported us while we navigated life back then. It was nice to see him. 

I also ran into Ethan’s cardiologist that said to me from the beginning “he’s going to be fine.” The cardiologist I have memories on him leaned up against a wall, squatting, with his face in his hands after a baby coded and died. It really is an odd place to be. It brings back so many memories that I sorted through on the long drive home.

After the procedure, Ethan was extremely miserable. He started telling me he has the rarest personality (based on two online quiz results). I told him that it doesn’t define who he is. He then proceeded to tell me that I don’t listen to him. He called me a few unfavorable names. No one  in the house listens to him. The reason? Because I still asked a doctor if he takes his pills in with him or not, before the procedure. Like he was stupid. He had told me he didn’t, and I didn’t take his word for it. I still asked. That basically meant I thought he was stupid.

He was right. He had told me the correct answer and I didn’t listen. I had his safety in mind. I wanted to be 100% sure. I then asked him if he wanted to do the advocating for himself from now on so that the miscommunications don’t keep happening and he told me I was being passive aggressive. I chalk it up to the fact he is 19 and clearly knows everything about everything. I hope some day he can give Paul and I a shred of kindness.

It saddens me and I feel defeated. These are difficult times to navigate. He accuses me of being emotionally abusive. I told him I felt the same about him. 

It seems like at this point I don’t even want to engage with him because he is so exhausting and I never know what sort of response I will have to maturely endure with a moments notice. 

I then, embarrassingly sad there with tears of frustration streaming down my face. I had to try and keep it together while the nurses and doctors kept coming in. There were 3 nurses in our room. At one point we had 4 doctors in the room and I had tears I was trying to wipe away. 

As the day went on, so did the stress.  The echo took longer than expected. They are painful. So it was over an hour of pressing and digging the probe into Ethan’s chest and ribs. Then had to have someone come in and repeat pictures, more pressing, more digging. Ethan’s skin was red from it all. It passed 2 pm and we still haven’t seen the cardiology team. Plus with a looming half hour drive across the bridge and a 6 hour drive on top of that…..I didn’t love the situation.

We finally got to see the cardiology team and Ethan was so miserable they ended the exam prematurely. They are going to do a video visit tomorrow when he has collected himself. I was a bit embarrassed but this has happened before.

The Uber took our grumpy asses across the bridge and we left on our long journey home, with over half of it in the rainy dark. My favorite driving conditions. Ugh! I can’t see very well.

Our ride home took a surprising twist. After about 2 hours I started to address what had happened. I asked if he though he was being fair to treat me like that and talk to me like that. He admitted it was not. We then began chatting and I learned he felt I minimized him when he talked about learning about his personality. I am guilty of that, because I don’t want it to define him. So we chatted a little bit about that miscommunication. We then put on Howard Stern and he was hilarious. We were both laughing. We haven’t really shared a laugh in quite a while. 

My bright spot was that Ethan’s kidney and heart are doing well. We have a few follow up appointments tomorrow. I also tried to keep up with work emails today and yesterday.

It’s been a long two days and I am emotionally drained. I hate these appointments.