Ethan’s Journey

​I woke up this morning and had my coffee with my Aunt and Uncle. It is our routine when camping. I then packed up the dogs, Paul prepared the jetski’s and I trailered them home. I always get tripped up when towing them because I don’t do it that often. I am not sure how many times the jetski’s caught my eye in my rear view mirror. I thought it was someone following too closely each time. “What the…” I would say out loud….then “oh” after I realized they were attached to my vehicle. I also was not thrilled about the big FAT spider 🕷️ crawling around on the inside of my car on the windshield.  I told that spider he needed to mind his own business and he could live another day. I sort of want a charlotte’s web situation to happen in my van the next time I walk out to it. I want a message in its web tomorrow! I got home and bathed 3 out of the 4 dogs. Moe will be tomorrow….maybe. I cleaned out bedding and did the usual dog maintenance complete with ear cleanings today.  I did som...

​I am not someone who enjoys eating, or smelling things that live under the water being served as food. None of it….with the exception of fried clams. The caveat is that the fried….to clam…ratio has to be “just perfect”. More fried, less clam. The Shorline Lobster bake did not make me want to eat lobster. Watching people pull apart the lobster and avoid “the green stuff” that oozed all over the plate while using utensils I had never seen before (because I don’t like sea food).  They were getting “lobster juice” on their hands, clothes, anything that was around. It was neither graceful nor appetizing. Lobster water was leaking out of the lobster anytime a lobster was manipulated to try and crack it open. Shooting and dripping all over ALL surrounding areas.  I was trying to figure out what “the green stuff” was.  Is it poop? Liquified organs? Nope! I had to google it. It is called Tomalley. It acts as the lobster’s liver and pancreas. So it literally filters toxins all day...

​today was chilly in the morning. It didn’t stop me from sitting and chatting with our shoreline neighbors sipping coffee. We were having a nice chat and lost tract of time. I was a little late to sign into work. Woops! It was chilly in the camper. The heat was on. Jiminy needed his winter jacket on. I got the call from the heart team today. Ethan stayed true to his oddity and is not in rejection. Yay! Ethan’s heart team is on the ball. I get so much information from them. We are still waiting on the mmdx test and those will come next week. He also is getting another Prospera test done to see what the results are. That is the test that looks for donor DNA. That was the test with elevated levels that started all of this. I connected with the kidney team to set up a kidney biopsy. His doctor has done more research and decided that with the information they have, we do not need to move forward with a kidney biopsy.  While this is good news, I did feel cautious and asked for more clari...

 It was a calm day. Much better than yesterday. My work day was full of squashing fires and helping coworkers. I talked to a coworker that is fairly new and discovered that she wasn’t as prepared as she thought she was for a big meeting. She was able to reschedule until next week and we meet together tomorrow to plan. I want her comfortable and confident when she holds her first meeting. After work I drive up to camp. The leaves are changing. It is pretty to look at the leaves that are brilliant. They are in hospice when they are the most brilliant. As I drove the familiar roads to camp (a delightful drive traffic wise), the sun was starting to set. The colors blended and changed across the sky as the darkness arrived.  There was still artistic colors splashed across the sky when I pulled up. The air was still, the lake was still and the sound….just bugs singing away.  I put some things away and fed the dogs. About a half hour passed and it was dark. The temperature was s...

​I had a doctor’s appointment this morning, was able to make it home in time to pack Ethan up to get to the hospital by 12:30.  He had his biopsy today. We met with his NP before hand. She was excited to share that they want to put him in another research study that will help gather more information about his heart which can help him and others. The Transplant office just got approved as a testing facility on last Friday. He is the first patient they will submit. The test Molecular Microscope Diagnostic System. It uses genetics to create a “profile” within a database. They can use the profiles from other people around the world to compare his profile to. It is supposed to help with difficult cases and supplement the diagnostic precision. It helps pick up on potentially missed rejection cases. It sounded like a good tool to collect more information to learn from. Information is power. We laughed when she said they use it for “difficult cases”. Ethan was the first person they thought...

​ Today went by relatively quickly. I had my grocery pick ups to do, managed some of Ethan calls about his heart biopsy and took the dogs for a run around the field. I can feel the house getting chillier day by day. We still have open windows in the bedrooms round the clock, so that doesn’t help. We are dragging our feet to turn on the heat. (This could be a NY slogan as I know I am not the only one). I can feel myself getting lazier as the days get shorter. I have been trying to do some sort of physical activity daily. The struggle is real.