8/30/21

Today was back to work. When I pulled in the parking lot, I pulled forward onto the grass a little and then backed into a spot. The way my headlights were shining, made it look like boobs. (My 7th grade maturity level) Yes I know that is immature. But it made me laugh.

I felt good about the progress I made today. It is always nice to leave work feeling accomplished.

I clocked out for lunch and picked up Ethan. I ate while driving and dropped him off at his co-op at The little Speed Shop. He has to satisfy a number of work hours to get credits. I told him to take it slow so he worked a half day. We will see how he feels tomorrow. I know that he is walking around with extra toxins in his blood stream, knowing that they make him feel tired and unwell. He looks normal. A lot skinny, but he is getting there. We talked about making sure he eats, rests when he is tired to retain as much energy as possible to continue to push through and tackle his goals.

I dropped him off for the afternoon (damn seizures or he could drive himself). I was able to get back to work only 10 minutes late (only because I had to print something out when I got home to pick him up. Our computer is a dinosaur and every task requires buffering I think.).

Paul picked him up on his way home. He had a good day but was tired. We talked about maybe seeing how he feels tomorrow and perhaps adding another half day in somewhere. He told me about how he was helping with a car and whatever they were doing required different levels of troubleshooting. It sounds like the guy working with Ethan, he really admires. It was cool to hear about the adventures of his day there all while at ease because they all know he is medically fragile and they are protective of him. What a great support system.

I also found this cool changing table on the side of the road for my friend who is pregnant. It sounds dirty, but it was washed with soap and water. It was then pledged, with love, to make sure that this little baby was safe from any germs. I was giddy while cleaning it up and having visions of little fingers and toes moving around. I had flashbacks of singing crazy songs to my kids about pooping and peeing and getting clean pants. I am so happy for her and her husband. ❤️

Avery and I took the dogs for a walk in the field. They are silly. They run so free and bark and play with one another. I am not sure who enjoys it more. It was exciting not to have to do dialysis tonight.  The next 3 nights will be dialysis nights. It gets hard because I can’t leave the room for hours. There is so much that doesn’t get done and our house is somewhat organized chaos.

With the help of our financial social worker, I sent the paperwork in for Medicare for Ethan. The process takes 2-3 months to complete. Ugh!  I also heard back from Medicaid and they forwarded Ethan’s case to the state. That means it wasn’t an easy slam dunk for Medicaid. The state will want more proof that he is medically fragile. I had little emotion about this because I expected some kind of road block. “Are you kidding me?” Is my new phrase. 

I am not sure if I should just include pictures of his dialysis machine that sits inches from his bed….or the waterline that sits on our rug that we had to tape down so we don’t trip on it….that connects his dialysis machine to the sink in our bathroom.  Or maybe the catheter that sits in his jugular vein that has been there for 9 months. I am sure whatever request is made, it will be a doozy.

I also got the final word that my case was presented at rounds in NYC with my surgical/donor team. I officially got the green light to say I am healthy enough to donate my left kidney and ureter. Woo hoo. 

I have been taking my vitamins and told Ethan I would try to give him the healthiest kidney possible. I intend to do so as well.

Today was a good day. It was Monday too….so weird. Hoping the rest of the week follows suit. My friends and family are camping this weekend. It is my weekend to work. I am working Saturday and Sunday. It will be a solid 45 minute commute. I am not spending the night every night but am looking forward to seeing our camping buddies. Holiday weekends are fun.