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

 Swirling and twirling thoughts made my sleep last night less than stellar. How do I expedite Medicaid and Medicare? Can you speed up the government agencies? Impossible.  I can’t qualify for paid family leave until November. We can’t do the transplant until my birth control has been removed for 6 weeks. Need to schedule that appointment. My work is going through a transition in November with a change in ownership. How will this factor into the safety of my job? How do people do this without going broke? What about Ethan’s college classes? We have to move again. So that was my night last night. The room we are in is small. It felt even smaller with the walls closing in. We all need to have these freak out, woah is me moments. In addition to the appointment we attended today, I was mulling. On the back burner I was formulating a plan. Tuning and fine tuning….and more fine tuning.  Throw in a little bit of closing your eyes and jumping….and just knowing things will work out. As with othe

4:00 am s when the alarm went off. We had to leave early to make it to NYC for our first appointment. It was an easy drive for me, because Paul drove.  We met with the surgeon’s today. We meaning Ethan and I for his surgeon. Only one parent per covid rules.  I met with my surgeon later and brought Paul with me. I can’t imagine being in his shoes and not being able to be part of Ethan’s appointments. Stupid covid! My appointment was fascinating. My surgeon showed me my ct results. In full detail! I got to see my cat scan of my body and vessels. My kidneys are beautiful and symmetrical.  Wow! Science nerd. They will be taking my left kidney and ureter. Apparently they take only a small portion of the ureter due to the blood supply. I mean I guess I won’t need it if it doesn’t connect to anything. We are learning and are fine tuning our plan for transplant. I have never been so pumped for surgery (probably because I have never had surgery). My surgeon paved the way for these surgeries to

Ethan had dialysis today. He weighed in at the most he has weighed since the beginning of the year. 110#. We are hoping he can keep this trend up.  He is feeling anxious and crabby as we prepare another trip to NYC. We will be meeting with his surgeon, my surgeon and he will also have his heart biopsy. We will be there a couple days.   Anxious and crabby aren’t really the words to describe his attitude. Luckily I know that he really struggles with these trips. That knowledge is so valuable. Ethan becomes belligerent and down right pissy when these trips come about. I can’t really blame him. I have learned to not engage. We weather the storm the best we can. Is it because of all he went through? Is it because he is a teenage boy? Is it both? It’s probably both. We never know if he is going to just grunt and mumble or fly off the handle over something minuscule. It’s all part of the emotional rollercoaster we juggle. 6 hours in the car with that isn’t the most ideal. Today the blood pres

 As I was walking my dogs this morning, I thought about how great they are as friends. On our walk, they happily trotted along, peeing on things, sniffing things and seemed content with just that moment. Wow!  Maybe I will try not to think of the future or past and just try to live in the moment more often. This is kind of hard to do.  Ethan stayed busy today tinkering. He tinkered with his remote control car, he worked on his car for a bit. I am glad this brings him joy.  I am tired. I am going to bed. Good night all.

  Today was full of sunshine therapy. I needed it. It was spent on a boat. It was a nice way to finish a tough week.  Avery and I went swimming together. She always says I work too much. Not today. We enjoyed our time being stupid together.  We went to dinner, sat outside and enjoyed live music. A meal you don’t have to cook always tastes better.  This day was a gift. There was no hustle, no appointments and no work. The biggest accomplishment was tiring Phineas out by letting him swim for hours. Perfect!

Today I felt accomplished. I was able to make some good progress on a project I am working on as well as secure Ethan’s SSI so he can start gaining some financial independence of his own. This was something I worked hard to secure for him. The amount of hours, frustrations and emotional highs and lows within this process have been bountiful.  I still have some work to do but overall we at least have that secured for Ethan. We just have a few more short steps, papers to fill out and goals to reach before he gets his first payment. We have been working on this since February so I feel like it is a huge win. Ethan is feeling a bit odd about being able to collect this benefit. I keep trying to explain that if he was a regular kid, he would have already had a job and been able to work to save for his future dreams. Because of nasty heart disease and now kidney disease, he was not able to be like everyone else. This will help him not fall too far behind so he can take off running. I was expl

 I woke up to my relaxing day off, completely exhausted this morning. It’s weird, I had no trouble falling or staying asleep. I am not even sure I moved and for all I know, could have stopped breathing. I woke up and dragged my butt to find and say hello to my morning friend, coffee. Unfortunately it was more of a hello grunt. My eyes felt heavy and puffy.  I looked in the mirror. What the heck to I do in my sleep? My hair was looking like crusty the clown. I had two weeks worth of baggage under my eyes. Somehow I was missing an earring. Gorgeous. I wondered how I was going to make it through the day. I started preparing for my meeting tomorrow with SSI, gathering all the stuff they asked for and placing it in one spot. Soon after, Ethan and I were on our way for our medical appointment extravaganza. The first appointment, the lab, at Strong. Turns out, I was doing better than the phlebotomist. She was out of sorts, disheveled and doing a lot of breathing and talking to herself.  Oh bo

 I made it through my 14 hour shift. I am tired and cranky. I don’t even want to be around myself. Ethan and I are dreading tomorrow. It will be a long day. We will get through it. We are tough. I am not passing go. I am not collecting $200. I am going to bed.

On my lunch break I was able to order more medications for Ethan, submit more paperwork for Medicaid and take a walk with Avery and the dogs to fulfill my “exercise” portion of my healthy lifestyle plan. The sunshine therapy was nice too.  When I got home from work, Ethan was really excited to share that he had taped and edited his next YouTube video. I provided the link below. https://youtu.be/kIgh6vAT8v8 He has changed how he is editing and sharing it. He is now reading my blog posts that I kept while I was in NYC. This was the best decision I have ever made as it captures each event and ounce of information given to me. While blogging, I was filming to help Ethan share his story before we even knew he had one so impressive. Well I finally got to the one that knocked me down and left my emotional state mangled. His video was done well. I laughed out loud at several parts. Then, I knew it was coming. The entry that left a scar on me and changed me. There are a couple that stand out bu

I woke up early. It was quiet so I decided to take the dogs on a walk around Round lake. What a beautiful view. The dogs didn’t even know how lucky they were. All the exercise got my metabolism going. Paul and I packed up the camper and just like that, we were homeward bound. Back to reality. As I was thinking on our way home from camping, the workload was adding up. Piling up in a suffocating way. The next two weeks are going to be incredibly busy. How are we going to pull this off? Medicaid wants us to submit more information. There is more paperwork as well as another trip to the post office. We have an SSI meeting, several appointments including ultrasound of Ethan’s neck and arm looking for clots to be causing low platelets. We have lab work, nephrology and need to go to the regular doctor for the green light to fill medications.  Throw in there some full time work hours, dialysis and we have ourselves a busy little week. These are the weeks that I have to be diligent about eating

Today was quite pleasant. We did two hikes. One this morning. We walked all through the woods. It smelled so fresh and had a hint of pine in the air. We went to the golf course for lunch. The view is spectacular. Of course I ordered a prickly pear margarita. It had pink sugar around the rim which made the drink look beautiful. There is something about a beautiful drink that just feels fancy. We ate and then our friends and us decided to take the dogs swimming at round lake. This was a quick walk from our campsite. The dogs that like to swim had fun. The dogs that didn’t like to swim, patiently waited for the swimming dogs to finish. Phineas was pumped to swim. We found a nice big stick for him to chase. He loved the stick so much, he brought it all the way back to the campsite with him. It was really cute.  He is now 12. He can’t hear well but his passion for swimming has only grown. We also had a few short walks around the block today. These were because the dogs seemed antsy.  All an

 Hot! That is the word that best describes today. A perfect temperature to spend at the lake. Floating in the lake was relaxing. Paul and I have not spent this much time together in quite some time. Most of the time we are passing ships in the night. We share a house and a bed, but he is not up when I leave for work and I am doing dialysis or other stuff while he is mowing and doing man jobs around the house.   Ahhhh. This is the wedded bliss we have been trying to achieve for so many years.  Ethan did some editing today, on one of the videos he is making for his heart journey. I sent him some videos and pictures from the first few days after his transplant. It has been so therapeutic for him (since he does NOT want any therapy or talk about his feelings with a professional….yet). I hope some day he changes his mind. He has to be ready to accept it when he decides it’s time. Even I struggle sometimes when people give me a hard time about what I have or haven’t done, what choices I have

Nothing compares to the smile of excitement that contagiously spreads across your child’s face. “This is a milestone” Ethan proclaimed as he received the first car parts for his rebuild on the drift car. I asked him today if he felt ready to juggle college and his co-op. He said he thinks he will be quite tired but will be able to do it. Work hard, play hard. Paul and I have been trying to Model this for our kids. Sometimes it is not all fun and games, but other times it is. Get your work done and then play. We did an earlier dialysis session after completing a hard work week.  When done, we left for camping for the weekend with great friends. It was so needed. As I sat around the fire tonight, the smell of burning pine, bug spray and citronella. Perfect! The bugs were communicating to each other in the trees. The crickets were singing the song of their people. The chatter of our friends was not only comforting but medicine to heal the soul. Laughter truly is THE best medicine. Sometim

It was a “suck it Covid vaccine” kind of night. Ethan was feeling pretty good despite having the doom of his second Covid shot lurking over him. He was determined to not get slowed down by it and tonight found his joy. My leprosy poison whatever rash is subsiding. Prednisone saved the day. However, it goofs with my sleep cycle and I haven’t been sleeping too well. This worked out great this morning since we were going to get up anyway to watch the meteor shower. It was warm and dark out at 4:00am. The bugs were all singing their delicate mating songs. The frogs were making frog noises and there was no other noise pollution except nature’s overture . It was quite peaceful. The clouds were patchy but we could see some patches of stars.  All three of us were able to see a meteor zip across the sky. It was dark. When we were done, I decided to hook Ethan up to dialysis before work. He went back to sleep and I sat quietly tending to the  fidgety machine. For the first 20 minutes, the machin

I received the most wonderful news when I got home today. Ethan felt good today. He was able to live stream, he has been working on editing his next heart journey video and spent the afternoon outside.  Holy crap.  Ethan keeps having more memories from his time in ICU in New York City. He has been reading my blog. He told me he remembers making videos for Paul, to let him know he was ok. Ethan came up with a name for the beetle. Yuto. He chose this name because he thought this name would best represent this little creature. It was a hot and sticky day. It rained heavily and there was thunder and lightening out. Mother Nature grew a foul set of boob mushrooms in my front garden. It was her way to get me to chuckle and it worked. I consider it a smile to share with others. My hope for Ethan is that over the next 2 weeks he prepares mentally for college. He embraces that he can pull this off and keeps blazing the trail forward.  The kids and I have plans in the morning to get up early and

Day one post COVID shot. Ethan is doing ok. His arm is sore. He was a little tired, but ok. He ate well today. Tomorrow is another day and hopefully we can continue on this trend. The iron infusions have been helping. Ethan tried to drink a lot today and we dialyzed off the excess. The session was a little bit longer tonight, but we utilized the time by swapping out his bandage contacts to aid in the healing of the keratopathy in each of his eyes.  We got back in December to have them seen again. Hopefully they will be smaller. Today I ate lunch on the go. Avery, Theo, Phineas and I along with a special doctor went and did our annual traveling talk about animals and how to care for them. The kids are fun. Both the rabbit and Phineas enjoyed all the kids listening to their heart and being pet and loved on. Phineas was trying to see how many kids he could lick. One kid had a hat on and Phineas was playfully trying to pull it off. Animals are silly and make me laugh. It is after 9:30 and

Back to reality after a wonderful weekend. Ethan slept in until about 10 am. He was so tired out.  There was a big beetle that was found and was going to be sprayed with bug killer. I saved it in a cup for Ethan to see, because I knew he would find it fascinating. When he woke up, he was absolutely smitten with this beetle. I have no idea how he falls in love with these creatures so quickly (sarcasm). He almost immediately started researching what they are and their likes and dislikes. So now we have a pet beetle. This is not a new thing for Ethan. One time he had a “pet caterpillar” he found outside and let go in his bedroom. I found out on accident because Avery spilled the beans. We dug out an old tank that we keep around in case a squirrel or slug or beetle come along and needs a little love. He is making sure that if he handles it, he is washing very well to make sure he doesn’t pick anything up. We arrived home after being away, and started dialysis. Our session was a little long

Family day two. It’s so comforting waking up and seeing friendly faces. We did our anniversary walk to Starbucks with the dogs (actually only Penny today) to get a breakfast sandwich. We also picked up some arts and crafts to help Aunt Julie with a project. Avery and I helped Aunt Julie with her project to help her sorority. Avery then alphabetized the project. Ethan napped a lot. He was tired out from yesterday. He walked so much yesterday that he just had to catch up on his sleep. He napped in the morning as well as the afternoon. He did wake up and ate then napped again. Fun is so tiring. We had a margarita day. Strawberry, lime, peach, yummy! Margaritas are fun to drink and share. The more fun in higher humidity. Rain came our way but was no match for us. We ended up having a campfire.and visiting. Kids were riding bikes, scooters and rip sticks. I reflected about how one year ago this weekend, I tried to show off on a rip stick and fractured my elbow. There was none of that nonsen

 Today was a day full of smiles and laughter. We visited with family all day. It was so much fun. It was full of Avery putting mozzarella balls in Paul’s wine, Paul getting his pants pulled down. I wasn’t involved with any of this. Ethan and my nephew, Marcus, walked around target today while the ladies did some shopping. Ethan had fun today. It was nice to see him talking and laughing the day away. It was so good to see everyone. Paul has been out of town all week for business.  I think everyone was glad to have him home. Especially Avery. It gave her someone to prank. 

Ahhh. A day off. I utilize these days very wisely. They are coveted and valued. I gave the house a much needed cleaning and refilled some of Ethan’s medications. I also had to submit more insurance information regarding billing but it was totally manageable.  I am ready to have some fun with family. I have some new margarita mix to try that I have gotten great feedback on and feel that I have earned it. I sometimes wonder what life will be like after this kidney transplant. What will I do with the time I gained back? No doubt that I might be able to watch tv again. Sit on the couch with the family. I picture it like it was a year or even two years ago. We keep getting closer, day by day. I learned that one of the women that had a baby when we were in NYC, her baby finally got a heart. I am so happy for them. Then I think about the donor family. It’s such an odd cycle emotionally.   Ethan had dialysis this afternoon and then was struggling emotionally after that. It could have been beca

I am trying very hard to get all my duties at home done as well as continue my full time status. It has been a huge relief with the two big boxes  of Medicaid and billing with a big fat check mark in them. I did however receive another bill and anticipate this fun cycle to continue for the next year or two. Another box we are getting checked is college. Holy paperwork Batman! We are making some good progress on that front and with Ethan feeling better, I think he is actually looking forward to his classes and getting his hands under the hood again. We just need to keep up the iron. Covid shot number 2 is coming. I am dreading it for him. We got Ethan scheduled for the ultrasound of his arm and neck to look for blood clots that could be the cause of his low platelet count. It will be interesting to see what the surgeon has to say about it. I am sure they won’t want to operate on him if he isn’t clotting well. We are looking forward to a weekend full of family. It is our Annual Cousins w

Today was a quiet day for Ethan. He is starting to work on another YouTube about his journey. He was excited he felt well enough to do so.  I had a long day, surrounded by drama that didn’t involve me thankfully. Any drama is just too much for me. I worked long hours and am tired.

I made huge progress today. I finally submitted all the Medicaid info (which is a lot) and I was able to get (with significant help from Insurance) Columbia to withdraw all the past due accounts sent to collections as well as the current accounts that are due. They will be resubmitted and readjusted (hopefully) so that I don’t have to cut off Ethan’s arm and leg to pay for his heart surgery. (I guess it’s Ethan’s lucky day.) I was walking around with my thumbs underneath my pretend suspender straps, a bit smitten with myself. This weekend was rough because Phineas had some significant dental work and was uncomfortable. He started to refuse taking his medication. I hid it. I compounded it. I shoved unclear down to his stomach and almost saw my hand come out of his butt. But nope, he would reject all medications. Determined to outsmart this dog, I picked up some squeeze cheese (cheese in a can) and was making him little pill sandwiches out of cheeze it crackers. I would hide the pills on

Today was a low key day. I did a bunch of back exercises because I feel 40 years older than I am. Ethan had dialysis and I was able to disconnect him while he slept. So he got in a little nap which was good. I took Avery driving today. We practiced turns and parking. The practice paid off and she is getting it. The best part of the day was when we couldn’t leave the driveway because we didn’t want to disturb the little birds bathing in the puddles from all the rain we have had. It ended with “just drive Avery, they will move.” They were fun to watch blissfully shaking their bird butts in the water. Perhaps I will try that technique in the shower tomorrow. This week will be busy as I have a hectic work schedule, and dialysis for the first couple days. They rest of the week will be with family. We had dinner at Nan and Pap’s tonight. It was so nice to visit with them. Their friend made us hand made gnocchi that was Devine. Thank you Marlene, what a delicious gift. We all enjoyed it.

Today was a “work around the house” day. Ethan even worked on his car a little and did a module for MCC that he has to complete in the next few weeks. This is exciting because a few weeks ago he was exhausted by the time he turned his computer in that he couldn’t even work on it. It is far easier for me to meal prep on a weekend we are home. Sometimes with our tight schedules, it is nice to have something healthy to grab quickly to heat up and go. I did several meals for the next week. I also was able to get more paperwork together to submit for Medicaid. That was really good. I am going to bed early to make sure I have enough sleep time and get ready to tackle the day tomorrow.