Ethan’s Journey

 I woke up today and looked out at the lake. It was smooth. The sun was shining and I appreciated the gift from Mother Nature. Our first camping weekend after transplant was a success.  Paul survived another Memorial Day with potatoes in his wine. It’s an odd tradition. We started it several years ago. Basically we sneak some sort of potato product into Paul’s wine when he isn’t looking. This year it was tator tots. This was all Avery’s doing this year. I am so proud of her. She even saved some tots from dinner and was able to get him again later in the evening. As it turns out, the more you drink, the less watchful you become of your wine glass. Avery is learning some real life skills. Ethan’s about the same today. His appetite is down. He feels tired. Avery has been so kind to him. She does a great job of taking care of him. He vomited again when we got home. I communicated it with his doctor to let he know what was going on. He then got his appetite back a little bit. He had yogurt

What a beautiful day. The sun was out. Phineas went swimming. Ethan walked around by the lake.  He got some sunshine and fresh air therapy today. I brought some pillows out and set up an Adirondack chair. I padded it with pillows for his boney butt. He was frustrated that he was so tired as well as his mouth hurt. He is sporting a HUGE canker sore. Like his mouth needs another insult. His appetite is down. We have an appointment with endocrinology on Tuesday.   His spirits are ok. Just ok. Not great. Not terrible. Just ok. That is today. Tomorrow might be better or worse. We did have some bright spots today. Family time being the biggest and brightest spot.

Ethan vomited around 4 am this morning. He was upset. He immediately felt better. He was worried because it happened twice in less than 12 hours.  Today was the first day that he felt half way normal-ish with his mouth for breakfast. As the day went in he developed a nasty canker sore. Luckily he has his magic mouthwash. We had a nice day by the lake today, complete with a bon fire. Ethan was outside for a bit but stayed inside mostly.  The sun was out and while it was chilly, it felt good. Paul forgot his sunglasses. I told him he could borrow mine. He said that they would likely be too “girly” for him. I pretended to take offense. “They are not girly. They only have a few Rhinestones and maybe an animal print.” I felt very generous offering up my glasses. It seems Paul was desperate. He wore my glasses all day long. He looked fabulous in them. Ethan was in good spirits today. As long as he is, I am too. I am also glad that there was no more vomiting after 4 am.

Today was more dialysis training. I am pleased with how it is going. I think I am getting the hang of it. I am excited to see how well I do on my own. I will probably make mistakes but that is how I learn. As long as I don’t kill Ethan, I will consider it a win. We have come this far, so killing him is unlikely at this point. I have my BFF dialysis nurse as my cheerleader. I am picking him up his cheerleading outfit next week. Today was the first day that I have taken both my kids out to lunch since before covid. Both kids sat across from me. They have similar features. I feel an overwhelming sense of pride looking at their little round faces. I am so thankful I have them both. I read about another parents loss in one of my Heart Transplant Pages I am a member of. This mom lost her child this week. I cried for her. It is hard to even process how close we were to that. We were teetering this line for a while. A lump forms in my throat just thinking about it.  Hug your kids. This mom can

We had dialysis training this morning. I was in a much better place mentally today. I am going to miss all the fun I have with my BFF dialysis nurse when I do this at home. I may lobby to the admins to have extra “support” from my BFF dialysis nurse for an extended period of time so that I can continue laughing. It is a purely selfish request. I was told that tomorrow I will learn how to do the “sak test”. I am not sure what it entails but I am going to stretch extensively tonight. The sak test. Can you imagine the giggling coming from our room?  When we arrived home, Ethan hopped out of the car and within a few short minutes, had grabbed his camera and started filming, which is a great sign. He is slowly starting to feel better. His energy is slowly returning. He also was pissed about yesterday’s events. When Ethan gets pissed, he gets determined. He was the kid who wanted a toilet, on ECMO, and was trying to get out of bed despite all the sedation and paralytics thrown his way. He ge

Ethan got to sleep in this morning. I took a moment to have coffee in the back yard. The air was warmly and breezy. I had no idea what sort of crap was waiting for me to step in. I became very aware, very quickly that I am hitting my limit.  I sat down to write this epic bank note that was strictly all facts and no snarkiness.  I did have to read it and reword a few snarky things. That was difficult. I understand it is part of the process for SSI and they deal with people lying and stealing everyday. I do feel like I have to go out of my way to prove my innocence that I am not fraudulent.  I understand there are fraudulent people out there. I just don’t understand the how? I basically have to submit a note with supporting documents, possibly my left ovary (kidding but I wouldn’t be surprised) and discharge papers. This process started in March. I can’t imagine how people navigate this that are ill and alone.  I was getting mad at the situation. I typed the letter with a bit of fury. My

I was “out of sorts” this morning. My head was swirling with “don’t forget to do this today” and “don’t forget to do that today.” I was over tired and under caffeinated. Not a good mix. I was able to do auto pilot things, but any thinking was super foggy for me. We arrived at dialysis and my BFF nurse right away noticed I was “off”. I really tried to focus but kept making stupid mistakes. I couldn’t read and make sense of the directions. I was fumbling and just trying to get through it. I was strongly fighting back tears due to frustration with myself. He was kind. He insisted sometimes the care giver needs care too. Those were the truest words of wisdom I received today. I did receive other true words at work today and they were “don’t touch that without gloves. It smells really bad.” True indeed! I was upset with the conversations I had with Ethan last night and this morning. His recounting of the torturous ordeal getting the leads glued on his head. He was mentally and emotionally d