Ethan’s Journey

We have been keeping an eye on the weather this week. I reached out to the transplant team because it seemed like we would have to drive in some crappy weather for the biopsy. They were also aware that Friday is his birthday and it was very important to us to do nothing medical on this day, including traveling. Ethan’s lab work from over the weekend had improved a little bit. I asked if we could either do the biopsy Tuesday or Wednesday before the craziness of the storm. With his bloodwork, his transplant doctor decided it was ok to push the biopsy off until next week. She really does care about him and I do like how well they work with us. We are waiting to hear about a date for next week. This change in plan also changes Ethan’s anti coagulation plan as well as reschedule the covid test. I spoke with the hematology office to get the plan. I had an appointment to have my IUD put back in today. Wow! I forgot how uncomfortable that process is. I had some intense cramping as I got myself

 Ethan got his wish today from Make a Wish. He wished for a new computer. Not just any computer, a computer that he can use for editing his YouTube videos. He will be uploading more videos that detail the transformation of his car. Between YouTube and his merch store, his videography jobs and lawn mowing, he has been able to save up for parts here and there over the past several years.  He was so excited about his new computer. His face was so bright and he was beaming. It was a much needed interruption from the medical stress as well as schoolwork he is doing. He has to miss class this week for his biopsy. We are trying to reduce the time he misses as much as possible. Paul and I had a date in our dining room this evening. He was away snowmobiling and arrived home this evening. We decided that I can’t do long trips anymore because of my back. Figures. 

Today I rested my back. It is a bit sore. Snowmobiling probably wasn’t the best idea the other day BUT my incision didn’t hurt at all so that is good.  Ethan and I went to the lab for his follow up bloodwork. His creatinine came down a little bit as well as his potassium. Both are still high but going in the right direction. I created an email chain looping everyone in (hematology, nephrology etc) to develop the plan for next week. This is so convenient and I get answers right away which I LOVE. The biopsy is a go. They will anesthetize Ethan, make a small incision and take a teeny tiny piece of his kidney. They will stick him back up, make him sit there for 4 hours so they can draw his blood to get a hemoglobin level to make sure everything seems stable for him to travel home. We will then load him up and drive back home so that he can be in his own bed the next morning, his 19 th birthday. This year I told Ethan we weren’t going to celebrate his birthday in the hospital. This year wi

I FINALLY got my Paid Family Leave approved. What a process of intricate headaches that was. I feel like I am on cloud 9. Wow! I still am trying to get my disability approved for the time I was out for my surgery. I did follow up today and the company is waiting on paperwork to be filled out. So we will see how that goes. We had a meeting with SSI to see if we were doing anything shady since the last meeting. We go through these every few months. Ethan was able to answer all the questions with minimal help. This makes me feel good because it shows that he has been learning more of the stuff that he will be taking over at some point. Avery had her covid booster this afternoon. She is a champ with needles so it went fine. I consider getting my Paid Family Leave approved my big bright spot for today. Not that there was any doubt, it’s just with all the set backs….it was annoying. 

In all the excitement yesterday, I forgot to include I called (again) the company that pays out paid family leave. They had told me it would be 15 days before they could do anything with payment. A friend let me know that the department of labor states there should be a 3 day turn around time. Companies bank on that people don’t know this and take their time until you tell them you have contacted the department of labor. When I spoke with the First Lady, I told her I had called on Wednesday and was told about the 15 day holding period and let her know that the department of labor said she t should be a 3 day turn around time. This woman said that I would get a call from the case manager in 48 hours. Within an hour I received a call from the case manager. I explained what was going on and she started telling me that I didn’t fill our t a spot on my paperwork for a bonding date. What is that? I asked her to explain what that means. She starts asking “when was your son born?” I told her F

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 wer

We left for NYC with snow flurries in the air. The closer we got to Syracuse, the more snow was falling until we had zero visibility for about 20 minutes.  Kept following the tail lights of the guy in the vehicle in front of me hoping he stayed on the road. “How much longer will we have to drive through this?” I asked Ethan as he was checking the weather app. Luckily it didn’t last too long. We had flurries for about 2 hours of the trip. The rest was mostly sunny. After driving 6 hours, we finally made it to the hotel. I hate driving. I noticed that the hotel had a bar in it. We WILL be staying at this one again. My margarita was DIVINE! We ordered food and put the tv on. Our room is nice and has a L shaped couch to spread out on. Ethan found an interesting show called “Strange Evidence” that is pretty interesting. I was ready for bed by 7:30. Ha!