Ethan’s Journey

Today consisted of unpacking the camper for the season, getting everything clean in there, dialysis, and chores. We tried to pack all the chores in today, since we were hanging out yesterday and enjoying our time camping. During dialysis, Ethan and I talked about how he is again, worried about not coming home from NYC…..ever. What a heavy burden he carries. There is really nothing I can say that can make it better. So I reply with “I can’t imagine how scary that must feel to you.” I can’t say “this time will be better”, because frankly….I have no idea. I do feel a weird calmness about the whole situation. I am not sure why. But I don’t mind it. I ordered us matching shirts. We are going to wear them to the hospital. One is for the kidney donor, one is for the kidney recipient. They are hilarious. One thing about that jerk, hell, is I can’t feed it anything. The best way to beat hell….is to enjoy yourself, ohhhhhhh laughing for sure, accepting your cards and keep moving forward. I am go

Today I worked. Then went back to camping. We hung out this afternoon around the campfire to stay warm. Luckily the rain subsided. Ethan and his friends raced their go-karts and got muddy. He had fun. A day with friends is just the fix I needed. We went to a Halloween party. While we were there, I noticed there was a “vote for best costume” box. Everyone was to vote for the best costume. First prize was some gift cards. I thought it would have been funny if we all voted for a costume that didn’t exist. Then that would win first place….and how funny it would be that they announced a costume that didn’t exhaust. This is a bad habit I have when I have had a drink or two. Coming up with non-hurtful ways to punk everyone. I convinced everyone in our party to vote for the “tampon” costume (which did not exist). The “tampon” costume turned into the” Paul and Paul tampons”.  There is a chance we stuffed the ballot when no one was looking. I kept trying to convince everyone to vote multiple tim

Rain! Ugh. Not cool for the last camping weekend. Paul told me no animals camping as the kids and their friends are at the house. What? No animals? It is like asking me to hold my breath for the entire weekend. So I only snuck one animal with us. It was too late. Paul didn’t even know he was there until after we arrived. It is not considered camping unless there are animals with us. Lucky Ferguson. I have to work in the morning so we stayed close to home.  Ethan has been working in the garage all week on his go-kart. Paul and I agree it is great to see him out there again. It is great therapy for him to process things. Paul and I were talking tonight and I realized that we are preparing for the same thing to happen again. Paul said that “it is going to suck not being with you guys for Christmas”. Technically, if things go as they are supposed to, we will be back to the apartment by mid December….Paul and Avery will be able too become visit and even go see the big tree. I guess it is ha

Tensions are running high in this house. As we navigate through Ethan’s anxiety and him worrying that he won’t make it home after transplant. We argued over schoolwork today, but it was evident that wasn’t why Ethan argued with me. We don’t really argue, so this was a fun time (and by fun, I mean NOT fun). His point is that school work is a “waste of time”. Of course I got upset by this statement. After a while I realized he is so worried he is not coming home after transplant, that he is actively living like this is his last month alive. I was talking about balancing work and fun. He couldn’t verbalize it but he is worried this is his last month alive and he doesn’t want to spend his last month alive on schoolwork. Listening is key. I almost missed this information hidden within his teenage nonsensical banter with me. We were arguing over two completely different issues. I keep telling him that he needs to go to someone to work through his anger of having these health issues, anxiety

We found out our surgery date at 4:45 pm yesterday. I was also told I needed to complete another round of lab tests. So this morning I drove about an hour and 15 minutes to the closest lab that communicates with NYC, to have my labs done.  My appointment started at 7:30. It was an early morning.  I had my therapeutic blood letting and urine test. Then I was on my way back to Rochester. My phone blew up today with calls, texts and emails from New York City. Between Ethan and I, there were 8 appointments made, with more to come, all in the next few weeks. Mostly video visits thankfully. So far I have my pre-op visit (in-person) scheduled, waiting to hear when Ethan’s is. I am trying to make it for the same day or at least close together. The 6 hour drive is not for sissies. I also have to keep my team and Ethan’s transplant team separate. It is hard to remember who goes with whom. I get calls for appointments and I have to ask what team they are on. I have a place I am trying to rent to

 FINALLY! We have a date! November 30 th will be the transplant date. We have a number of things to do and research over the next few weeks.  I am so excited that there is an end to dialysis. I almost cried!  Ethan worked in the garage all afternoon with his buddy. They were tinkering with plexiglass and the go-kart.  We are still learning details and I have an early morning lab appointment tomorrow to repeat some tests.  We have to go down a week or so in advance for more blood testing and exams. Then we will make the move down for a number of weeks. This is GREAT news.

 I keep writing blogs and think that I posted but fall asleep and don’t actually post them. Ugh!  I got a call from Monroe County social services. They couldn’t tell me exactly what the deal is with the “exemption” but at least I made progress. I asked them to send Ethan a letter stating it was ok for them to talk to me. He will sign and return. It will be easier to communicate with them when they can actually give me information. They couldn’t explain fully but I can contact my transplant financial coordinator and social worker and they should be able to access Ethan’s Medicare number so we can schedule Ethan’s surgery. This prompted me to send an email to the transplant coordinator asking her to help us get on the surgical schedule. I will wait to see what the verdict is on that. I am sick of having our lives put on hold. Another dialysis day today. As dialysis comes to an end, I think of all the things I have to do before I can go to bed. These days are so long and tiring. I am hopi