6/8

Today was better than yesterday. Ethan’s mouth was about the same but he pushed through it and was able to eat. We added calorie powder to his food to at least prevent more weight loss. Eating takes him an excessive amount of time. Usually his entire mouth hurts around the clock. We are hoping all the homeopathic remedies as well as the medicinal remedies start to offer relief ASAP!

Ethan was struggling to get his school computer working. He needs to exchange it for a loaner for the next few days. We get that tomorrow. It is preventing him from doing his schoolwork.

Ethan  gets weekly lab work done. The labs monitor his electrolytes, kidney values and tacro level. The tacro is the rejection medication. The tacro level measures how therapeutic the dose he is on is. His level should fall between 8-10. 

He was sitting around 6  last week when the team was discussing the change in medication. Then the insurance company poo pooed that. The team had to get creative. They gave him a medicine that literally the side effect is raising the tacro level. His level came back at 20 today. Yikes.

Back to the lab tomorrow we go. We had to discontinue tacro to get it back down in a safe level. We are skipping 2 doses and will restart after lab work in the morning. This is a timed test and unfortunately it has to be done during Ethan’s class. 

We had our last training session “in center”. I had some bitter sweet feelings. We will miss seeing our BFF dialysis nurse each day. 😢

After dialysis, we headed over to the high school. We were going to pick up the scholarship awards that Ethan had won. He was getting photographed with the principal. He was awarded 3 scholarships and a computer, for him to put towards his education. His smile was big. It was the first time since COVID that he has set foot in the building.

After that I went into work for a few hours. After work, I had to take Avery to an appointment in the city. Most days I just feel like I don’t have any time to myself. It is a much better scenario than it was while Ethan was in the hospital though.

Ethan continued to struggle through his mouth pain. He felt a bit fatigued today but it seemed to improve as the day went on. 

My bright spot today was seeing Ethan’s eyes dancing with life as he received his awards. His hard work is paying off.