Ethan’s Journey

Dialysis seemed normal today. He took a test for economics. He played a few games on his phone. He didn’t have an excessive amount of fluid taken off. Everything seemed normal. His treatment was normal. His labs were taken. His blood was already returned. We were practically ready to leave. He was talking about what he was going to have for dinner. I looked away from him for a moment and out of the corner of my eye, I saw his arm in the air and it got my attention. I looked at his face and knew. “He’s having a seizure.” I told the nurse who was right there. I am not well versed in human seizures. Ethan has never had one before. He just HAD to make it so now we have to check THAT on all the medical forms as well as all the other boxes. So I did what any other Vet Tech would do. I treated him like a dog. In a calm and soothing voice I repeated “you are ok. Just breath and relax.” This was while I applied ocular compression to both eyes to apply pressure on the vagus nerve. We do this in

Ethan woke up and got himself ready for school. He logged into class and attended class. He got done with class and had 15 minutes to prepare for tutoring that started at 10:00. After tutoring we ventured across the city to get introduced to the wonderful world of home dialysis. Our trainer was not only engaging and funny, he made me comfortable enough to play a joke on him. For me, this is a weird compliment. I had to pass a colorblind was test. The first 5 answers I gave correctly. I had to read the numbers on each page. The numbers were either red with a green background or vise verse. After delivering 5 correctly, I gave an incorrect answer...on purpose. He looked at the number and said, no this number, assuming I had read the number on the adjacent page. I repeated the answer. There was a “processing” pause, as he tried to figure out what to do about this situation.  I busted up and said...” just messing with you”. He started laughing. I knew he would make a great teacher. Ethan h

Ethan had his standing 8:30 bloodwork appointment. His phlebotomist recognized his veins and remembered him. This made me laugh. I then rushed home so he could join his class for 15 minutes before his 9:00 tele health visit.  We met at 9:00 with his kidney transplant doctor. She was happy to hear of his progress. I again let her know this inpatient, middle of the day, 5 hours time suck of dialysis isn’t sustainable 3 days a week.  We got the ok to transfer. I will wait and see how things go during my meeting tomorrow with the home dialysis adult center and gauge when I can start training. Ethan had enough time to eat until I piled him into the car and took him to dialysis. It went well. Today he has made 150 ml urine. Woo hoo. His kidney values are still Way out of whack!  When we got home, I had fun watching our little dog, penny, hunt for frogs in our pond. She really likes watching them jump in the pond. She is obsessed.  Penny was my bright spot today. She is such a goof.

Ethan woke up and could not keep his eyes open. They were tearing excessively. He had to attend his zoom class. He made it through class but was having some difficulty seeing because his eyes were tearing so bad. My friend came to the rescue, AGAIN, and got Ethan an appointment at the eye doctor so that he could get “bandage contacts”. His appointment was at 12:50.  As we were driving, with all the eye stuff going on, we realized that I had never given Ethan all of his LIFE SAVING pills this morning. OMG! Induce panic! I said a string of not so kind words, all directed at myself and my stupidity. Ugh! We check in at the front desk. As we waited to be called back, I was trying to send a panicked  “what do I do?” Email to the NYC team. Will this goof up the bloodwork tomorrow morning? How do we treat tonight? Ugh! The NYC team directed me what to do via email. We have now put different alarms in place so we don’t repeat the same mistake. The contacts Ethan got are contacts without a pres

Today is a dialysis day. Ugh! We dread these days. I was able to call the other unit that teaches home dialysis. We have an appointment to discuss the next step later this week. I do have to say all the nurses at dialysis are fun and super nice. Ethan’s eyes are really bothering him. He finds it hard to read because his eyes constantly feel like they have sand in them. He tears all the time. We now have learned to take tissues with us when we leave the house. He wears sunglasses a lot because the light can be intense for him. We have learned to adapt. I had to read his schoolwork to him because he can’t keep his eyes open long enough to read and they just constantly tear.  We have an inquiry in with the eye doctor. His poor eyeballs. Ethan is frustrated with his progress and feels like he should be able to juggle his schoolwork load the same as he used to. Luckily the school has been awesome, supportive and I can’t even say enough good things about how much they have helped our family.

I woke up this morning and sat outside on our screened in porch. It was chilly but I had my coffee experience going on. The cup was warming my hands and I had a nice comfy blanket. The brisk air filled my lungs as I enjoyed the peaceful nature sounds. Our pond waterfall had a nice trickle. The frogs were out on the rocks even though the sun wasn’t out. The neighbors rooster was alerting them that morning had started. The cows down the street were bellowing and I knew it was breakfast time for them. These are all the things I when I was in the busy city. I was able to take both kids to the store today. My first trip taking them somewhere together. I was so thankful to be with them both. When I have these thoughts it makes me think about our donor family. What they would give to have this opportunity with their loved one. Don’t take for granted your loved ones presence for a second.   Ethan had a decent day today. He kept up at the store and wasn’t tired afterward. Wow! This weekend was

Today is Christmas. We had the Christmas music on. We had the smell of our Christmas quiche baking in the oven. Our tree is still up and the lights are twinkling bright. We always do a scavenger hunts for the kids.  We took the gifts Santa brought and hid them all over the house. It makes it fun for everyone. After our exchanging of the gifts we enjoyed eating the delicious quiche that we all have grown to look forward to on holidays. The burst of flavor of ham, cheese, spinach and egg danced around in our mouths. Yum! The morning reminded us that no matter when it happens, family time is priceless. We all were thankful Ethan was with us. We even got a special delivery of Terri Ann’s Christmas cookies which were a surprise AND delicious! We all enjoyed the day in our different ways. Ethan was feeling very tired but was able to say hello to his old friend, his car.  He started the car and had Paul move it out of the barn. It was nice to work in the garden again. All the dogs had a bath