2/5/25

 Paul and I were having coffee. It is the first time we have actually had a meaningful chat since the middle of January with schedules, snowmobiling, work and illness.

He started complaining about certain male genitalia ads he was getting on his phone. He was pissed because he keeps seeing more and more of them and he was wondering out loud why he was getting these ads. 

I shared that when he leaves his phone laying around I often say phrases around it to see if I can influence the ads he gets. IT WORKED!

He started laughing and said “unbelievable”. I told him if I ever stop playing pranks on him it means I don’t love him anymore and he should be thankful. Ha! He wasn’t upset and now when he sees those ads, he will appreciate the effort I have been putting in behind the scenes.

I didn’t sleep well last night and was up for several hours thinking. Occasionally this happens. My anxiety medications helps significantly with this, but last night I think I was over stimulated with the Urgent Care visit.

Today Ethan went for bloodwork. His kidney values have worsened. You can’t see how it affects him, but he does get tired with all the toxins circulating in his blood. His kidney team brushed us off again. 

I have played by their rules and now we are going to shake things up a little. I had a conversation with a trusted nurse to enlist the help of Ethan’s transplant cardiologist to do an “intervention” type conversation. I asked how to delicately approach either switching providers within the office OR transplant teams all together.

I also had a conversation with the cardiology team that Ethan’s potassium was super high putting him at risk for a cardiac event. He is supposed to be drinking a drink that is the consistency of gel/water and just as chalky. I know the compliance on Ethan’s part is non-existent. It’s gross! I have tasted it.

They are now switching him to a pill that he can take daily to help regulate this. I did advocate for this in the beginning and was told it wasn’t an option. But apparently now it is. I am wondering if it is an insurance thing…you have to have this before you can have that.

I spoke with the pharmacy to make sure the proper antibiotic is filled and the other one goes back on the shelf.  The pharmacy doesn’t have the pill for the potassium reducer, so I will pick up the antibiotic tonight and go back tomorrow for the other.

I felt like a ping pong ball today in a heated game. Bouncing all over the place today.