5/6

We made it home last night around 11:30 pm. Paul came and picked us up at Strong even though he had to work today. He stayed up late and got up early. I was very thankful. Ethan started his medication to ward off seizures. It is a low dose to be kind to his kidneys. We will see if it works.

Of course Ethan is nervous that he will have another seizure. I am nervous about leaving him home. I am going to give it a few days and see how things are going. Luckily he is a little more aware of cues that a seizure is brewing.

Today Ethan had a break from the shit tornado that seems to be our life right now. He even mentioned that it was nice to have a minute to rest. We weren’t rushing off to the next appointment all day long. I did have to call in 9 prescription refills to one pharmacy and two to an additional pharmacy. I confirmed things with home dialysis for next week, send a bunch of emails and talk to some people. However, it was nice to stay home today.

I spoke to our home dialysis nurse that has been assigned to us. I have already decided our nurse is going to be my new BFF whether he knows it or not. He is so fun. We have things set up for next week starting bright and early Monday morning. I promised him that I would be a ray of sunshine blinding him First thing in the morning. I hope he stays psyched. I am placing bets on how quickly he files a restraining order.

Ethan got his official acceptance letter to MCC. I showed it to him and he had a cute little proud smirk on his face. There were twinkles in his eyes so I know he was so happy about that. 

Ethan’s tongue is sore and it is slightly difficult to talk. His back is really bothering him. He was on our kitchen floor and that floor is hard and unforgiving. He has a bruise on his boney back. It is hurting him but he is still eating and busting through.

One of the bright spots is that we have met some pretty incredible people through this medical journey. I am excited to work with our new dialysis nurse on Monday. Ethan’s cardiologist called to check in on him. I know how busy she is. She is so great.

Another bright spot is that Ethan made another YouTube update today. This is huge. It is raw. He doesn’t have his typical spark. He has captured how draining it can be in his position. How things aren’t quite what he had expected. But he is coping and not giving up.