6/22/23

 I worked outside today. The sunshine was nice. It was the first time I have worked outside since Phineas has been gone. I gave my remaining dogs a food scavenger hunt and thought about how much Phineas enjoyed these. I was also frustrated with something going on with work and I just started to cry. I miss him so much. Of course I was wearing a rayon type shirt and my tears were falling down and making it look like I spilled all sorts of water on myself.

My desk today.

My face was red and puffy. Totally work appropriate.

I was then thinking about what a gift it had been that I got to work at home for the last several months with him. He got to have these food scavenger hunts a lot and he loved them. He then would find all the food and nap in the sun right next to me. What a gift that was. Of course he was a pain in the ass too that whole time, but I can ignore that part. He would go over and start eating grass and I would say “what are you doing? What are you a cow?” I would pause and say out loud “well you kind of look like a cow”. Then I would chuckle at my own stupid joke.

I didn’t anticipate feeling sad when I went to work outside this morning. But it happened. My grief came right out. Gone but NEVER forgotten.

I recovered from that fun little detour in my day and enjoyed the birds, breeze and sunshine. It was a pretty day. I stewed more about my one work situation.

I then received a phone call from Ethan’s nephrologist saying that even though Ethan’s kidney levels came back within the normal limits, that he had some protein in his urine indicating that there might be a problem with the kidney. Of course. I knew the day went too well and too smooth yesterday.

His doctor would like Ethan to go back to New York City for a kidney biopsy. This will be done as an outpatient as they think Ethan won’t need sedation or anesthesia. 

She described it as that they needed to numb the area, then insert a biopsy needle into his kidney about two centimeters or so. Afterward, they need him to lay flat for 4 hours. This will put us on the road back home in the afternoon. All of it sounds awful for Ethan but he has navigated worse.

As his doctor was describing everything to Ethan, he just simply said, “no! I am not doing that.” I explained the alternative is that his kidney gets worse and he could potentially need dialysis again. “Nope, I won’t do that either. I am sick of dealing with this. I have been dealing with this for years.” 

Ethan’s doctor and I continued talking and left it as that we would touch base again tomorrow. I asked Ethan what his end game would be if he had to go back on dialysis. “I won’t go back on it.”

I am hoping that this was just a knee-jerk reaction and that with time he can embrace what needs to be done. It’s hard to watch your kid struggle with mental illness and deny the help he needs. 

There are a few things that could be going on. An increase of protien due to a medication Ethan is on. I pointed out to the doctor that it appeared the medication wasn’t likely the culprit because Ethan’s value came back incredibly low to indicate he hadn’t been taking it the way he should be. 

Another reason is due to rejection on a cellular level. This can be treat with a combination of pills.

Another reason could be due to antibody mediated rejection. This is where Ethan’s body has antibodies against the donated kidney. This is a bit more tricky to treat. It sounds relatively involved requiring a port to be put in and infusions every other day over a period of time.  

Treating isn’t even an issue if I can’t get the kid to agree to do it. Suddenly my work issue was super stupid. I hung up with the doctor. Ethan and I exchanged a few words. I had to disengage, so I went back to working. I left Ethan marinate the information he was given. I am hopeful he will come around and choose to have the biopsy done.

It does get frustrating to feel like something is always waiting around the corner to set us back. I don’t want to go back to NYC as much as Ethan doesn’t. The drive is long and tense. I never know what emotional state Ethan will be in. No matter what, as the adult, I have to remain calm, collected and with high emotional intelligence or we don’t get through the day. It’s hard to be that kind of adult.

I then got a call from cardiology. Great. What did they find?

They said that Most of Ethan’s labs came back and he has zero rejection of his heart. Yay! We are waiting on another test to come back that also looks for rejection but we are headed in the right direction.

As I wrestled with the information thrown my way, I felt like I had the makings of a country song thrown at me. 

“My kid could be sick again. He doesn’t care. He worked hard for nothing. I have poison Ivy and my dog died.” The end, cue the dueling banjos. Seriously! What a damn joke.

What is the bright side of today?  For me, I would say that Ethan had zero rejection on his heart biopsy. They noticed an issue with Ethan’s kidney quickly. Due to this speed, they may be able to head off bigger problems.

 It’s Penny’s 5 th birthday and she had fun laying in the sun in her birthday suit. I spent time with Avery and we laughed while people watching. There is still good things that surround us. We just have to look for them.