1/26/22

Ethan had his appointment this morning. We snuck up to see one of his favorite nurses. It was so good to see her. 

Then Ethan had to go to an ultrasound appointment. The reason for this is because last week Ethan’s creatinine (kidney marker) was high last week. His doctor didn’t want to screw around and was worried Ethan had a narrowing in his ureter from where his stent was.

We were excited because we saw another favorite nurse when Ethan was in the waiting room for his ultrasound. I felt like I saw a celebrity. It was so good to see him and Ethan was so excited. We made a scene as we were like excited little girls hugging and squealing….all 3 of us. 

Turns out, the ultrasound looked good. There was no narrowing in Ethan’s ureter. The profusion in his kidney was good meaning the blood was flowing well and all areas were getting oxygen.

As we made our way home, we got halfway through New Jersey and the phone rang. It was Ethan’s nephrologist asking if we had left yet. I told her we were on our way home. She asked if we could come back but I declined as we were an hour into our trip home. I was not going to turn around and make the trip over the damn bridge again.

The reason she wanted us to come back was because Ethan’s potassium was very high. Dangerously high. Like cardiac arrest high/ heart attack high. So we had strict instructions to get home as fast as possible and to stop at the pharmacy on the way home.  I called Paul and had him pick up the medicine so we wouldn’t waste anytime.

It was a hard drive home. Ethan was scared that at any minute he was going to have a heart attack or cardiac arrest. He was very worried. I wanted to hold a mirror under his nose the whole ride home so I could make sure he was breathing the entire time…but I didn’t.

We talked about things like how most kids his age worry about college and he has this extra level of having to worry about medical procedures and his heart randomly stopping.  I couldn’t wrap my brain around why was his level normal last week and now it is dangerously high? Medication can cause it. But his medications were adjusted pretty closely. Renal failure can cause it. Don’t want to even have this as a consideration.

When we arrived home, Ethan immediately took his medicine. He has to mix this nasty powder with water and drink it. It was the color of Homer Simpson’s skin. Eww. It looked gross.

The nephrologist called again and said that Ethan’s rejection medication was appropriately dosed. She then said “I am very concerned about Ethan’s creatinine.” I do not like this.

Ethan’s kidney levels went up and there really isn’t a good explanation as to why. So the next step. We have to go back to NYC next week for a biopsy of Ethan’s kidney.

The prep work for this is awful. We have to discontinue the Coumadin, start the painful and traumatic injections of lovenox, get another damn covid test all before next week. He just started college this week and he already has to miss a class next week for the biopsy.

They are looking for rejection. His doctor is thinking he is rejecting the kidney and that is why his bloodwork is all wonky. There are two types of rejection, either cellular or antibody if I am getting it correct. Each type is treated differently, so it is important to distinguish what type of rejection could be starting. 

Ethan was devastated as were the rest of us. He is losing hope that life will ever be normal for him. He is constantly having things changed and being scared. He doesn’t like the constant threat that something bad is going to happen. I made it clear that I wanted to be home for Ethan’s birthday. I am hoping this will happen so he can have a little bit of normal in his life.

Rejection can be treated with medication. The bright spot is that we are still being seen so frequently that we can catch it and treat it before any real damage happens. It has been an emotional day. My butt hurts from driving. My back hurts from driving. Did I mention I don’t like driving? Ha ha.