Ethan’s Journey

We have this residual issue in our house where dishes pile in the sink. The dishwasher completes it’s cycle. The dishes are clean but not unloaded and put away. More dishes pile in the sink it becomes unsanitary, no one wants to help and it snowballs from there. There is finger pointing and tattling on each other. Blaming “you didn’t rinse your dish”. The whole 9 yards. It’s exhausting. I hate doing the dishes. So I cook and let everyone else do the dishes and eat the food I make. That the the deal I came up with. Yes it benefits me greatly. But I don’t ask for a lot. Avery has been unloading the dishwasher for several months now. Ethan isn’t and hasn’t for obvious reasons but now that he is starting to feel better it will become more normal much to his dismay. I know everyone that has teens goes through their little life struggle with basic human decency whether it’s the dishes, vacuuming or clothes on the floor. Nothing parents can do or say to help them realize what little hurricane

Today was back to work. When I pulled in the parking lot, I pulled forward onto the grass a little and then backed into a spot. The way my headlights were shining, made it look like boobs. (My 7th grade maturity level) Yes I know that is immature. But it made me laugh. I felt good about the progress I made today. It is always nice to leave work feeling accomplished. I clocked out for lunch and picked up Ethan. I ate while driving and dropped him off at his co-op at The little Speed Shop. He has to satisfy a number of work hours to get credits. I told him to take it slow so he worked a half day. We will see how he feels tomorrow. I know that he is walking around with extra toxins in his blood stream, knowing that they make him feel tired and unwell. He looks normal. A lot skinny, but he is getting there. We talked about making sure he eats, rests when he is tired to retain as much energy as possible to continue to push through and tackle his goals. I dropped him off for the afternoon (d

Today consisted of much needed yard work. I transplanted some black eyed Susan’s from my moms house. This felt really good as my gardens have been neglected since last fall. However is was hotter than satan’s butt crack outside. I considered just throwing away my clothes because I was sweating so much.  Ethan went outside early and spent several hours doing car things. It was really good to see him finding his joy. He also had a great PT  session while doing it. He is starting to get his muscle back and put a little meat on his bones. I came inside and did more meal prep and made another 10 meals of chicken vegetable soup with low sodium. I also made some tortellini for dinner tonight and put it in the fridge. I had to get Ethan’s dialysis done and knew I wouldn’t want to screw around with dinner afterward. It rained this afternoon which was great because of my transplanted flowers. They will get to drink up and grow some good roots. After dinner, Paul and I sat outside with the dogs a

I slept in today until 7 am. It was glorious. I set up my crock pot for food prep. Paul and I had coffee together on our screened in porch with the dogs. Avery and I ran errands and then came back home for the next step of food prep.  Food prep allows me to make low sodium foods with fresh produce and meat. It also allows for quick healthy options for a rushed lunch break or quick dinner prior to dialysis consuming the evening.  I make several meals so we can just pull them out and heat them up. The kids sometimes have them for meals too. We just need to stay healthy. I made up several fresh veggie soups, curry chicken salad and chicken and rice meals. We are set for the next week or two. I gave Ethan dialysis. Afterward, I rushed to put everything away and be ready to go to a work party.  Paul, Avery and myself went to the work party and had fun. I was incredibly tired from everything. So we just had to go home .  Once home I fed the dogs and went to bed. More food prep tomorrow.

 This is what Ethan’s dialysis catheter looks like. It’s decent in size and hides under his shirt. We did dialysis today. Today I worked as well as went to two pharmacies. I made several calls to different agencies. Most I had to leave a message and likely won’t get a return call. Sigh. I was able to forward paperwork via dinosaur fax to SSI as I still need to provide documentation of certain things. I made a call about Medicare paperwork to get the ball rolling with our financial coordinator. Ethan qualifies due to his complicated medical history. We have to financially separate from him now that he is 18. This is hard because typically parents still somewhat support their 18 year old kids.  I also know that Avery has been neglected by me this week. I so much enjoy being around her. I made it a point to do stuff with her this weekend. We both will benefit. I overheard someone complaining about how stressful their life is because they have to take their kids school supplies shopping. I

Today was long. I had many phone calls and emails to field as it seems the scramble is on to get this kid on the surgical schedule.  First, his biopsy was negative for any signs of rejection. Yeah!!!!!!  I had a meeting for clearance with the pulmonary hypertension team at 2:00. I rearranged my work schedule so that I could take this meeting at home with Ethan. (He has to be present for them to talk to me because he is 18). I pulled in my driveway at 1:59. Ran in the house and logged into the zoom meeting. I hadn’t had anything to eat at all and was a bit starving. I ate while I waited……and waited and waited. After 30 minutes, my lunch time was up and I had to go back to work. I sent a note to Ethan’s transplant coordinator letting her know that the meeting was a flip and that we would need to reschedule. I arrived back at work and my phone rang. It was the pulmonary hypertension team asking if I could do the meeting. Ugh! I specifically allotted time so minimize my hours taken away fr

Our heart catheter/biopsy appointment time was moved from 9 am to 7 am. Ethan got some numbing cream from where they make the incision.  Last time Ethan went in, the doctor didn’t really talk to him and let him know what he was going to do next. We communicated that this was important to Ethan. The doctor we spoke with had never worked with Ethan before and he asked Ethan if he wanted to watch. They brought in another TV screen so Ethan could watch what was going on as they fed the catheter up the vein in his leg. Ethan got to watch the clamps chomping on a little piece of tissue of his heart. He thought it was pretty cool. “That was the best cath I have ever had.” He told me. He had to lay flat for 2 hours. In those two hours, his cardiologist and cardiology NP came by to have a visit/exam, he had a full echo, ekg, meeting with the nutritionist to sign off on transplant and met with the heart cath doctor.  We walked back to the hotel, packed up and left. Ethan’s incision was a bit sor