Ethan’s Journey

I woke up this morning crabby. Not about any particular thing, but just feeling grouchy. As the day progressed more and more things became glaringly annoying. Sounds, smells, gossip and even day to day friendly chatter was pushing me over the edge.  I don’t like feeling this way. I can’t even stand myself. I almost think I just haven’t had enough down time to properly recharge my introvert batteries and it is putting me in a tailspin. I kept finding more and more things to negatively grump about. Then I asked myself…..what was ANY bright side today? I was even annoyed with my own question. Who even cares? Refocused on not wanting to feel this way, I posed the question again to myself.  It was as I was driving home from dropping Avery off at a school function that she was excited about. It is homecoming weekend. Tonight was the powder puff. The girls dress up in football gear, the juniors against the seniors.  The boys dress up as cheerleaders and cheer the players on. The...

Today was my day off. I spent the morning trying to deal with our continued billing/ insurance/ collections issue. Lots of phone calls but there has been some progress so that is good. I was finally able to file a ton of paperwork. I spent at least two hours sorting and filing. I picked Ethan up from school, went to lunch. At lunch we got into a great conversation about human behavior, how we as people should always continue to refine ourselves into who we would like to be. Watch the behavior of others we find unfavorable and work on how we can avoid those mannerisms. We also talked about people that are unwilling to accept that they may need some self improvement and how it hurts them, but we have to accept their choice not to improve.  We got so involved in our hour long chat that we were almost late to our appointment. We arrived thankfully on time but not many seconds to spare. Got to see my BFF dialysis nurse.  We also were visited by the nutritionist. She walked in, said...

Ethan had lab work done. Finally, we are in a therapeutic range with Ethan’s rejection medication.   Ethan gets to have a lab work break for 16 days. Wow! I think that is the longest break in 10 months. Wow! Ethan’s anemia is resolved. His body LOVES and appreciates the iron infusions. Last week Ethan’s neutrophils (his soldiers of his immune system) we quite low. It put him at risk for any hint of a virus to completely take over his body.  His neutrophils have come up, and while still low, are not in as much of a danger zone. His platelets, while still making a slow army crawl toward the normal range. This bloodwork to me was wonderful! His transplant team as well as hematology are glad he is headed in a good direction. Ethan feels good. He is eating. He is gaining stamina. He is able to juggle more things he wants to do.  Today I got in touch with my BFF dialysis nurse.  Ethan posed me a real problem this evening. I use a formula that takes Ethan’s current weight a...

 After a couple of phone calls today, I am hoping that we may have made progress on some of our insurance claims. Not huge progress but progress is still progress so I will take it. We are solidifying our trip for Ethan’s first “annual” heart catheterization and biopsy next month. It will be a month early but fingers crossed, we will continue to have good news. Ethan has been quite upset with the current health care crisis. He hates that the people that worked so hard through the pandemic, are now losing their jobs. His plea is that if you have to go to the doctor or are around any healthcare worker in any capacity, please be kind to them. Thank them for coming to work.  Ethan went to his Co-op today and we spent the entire car ride talking about the frustrations of politics, we discussed his beliefs and mine as well, even though they aren’t exactly the same.  It was a nice discussion, but I could tell he was dedicating more energy to being upset about the things he can’t...

What a beautiful fall day. The colors were vibrant, the weather was not humid or sticky. E Han and I did his dialysis in the middle of the day today. He was a bit wiped out afterward but still wanted to go to the pet store afterward. He likes looking at the bearded dragons. I like looking at the ferrets. Too bad they smell so bad. Avery bought some fresh plants for her fish tank. We all did some form of work today. Food prep, stacking wood, doing things to ones car, and my mini me worked her butt off at the pumpkin patch. It is so cute there. I also got to mow the field. Paul saved it for me. I had Penny with me and she ran so much in the field, her legs were grass stained. What a silly dog.  She is all tired out right now. Good night all. I am tired

Avery worked today. She is so cute. I dropped her off at her new job and then proceeded to check tasks off my list of things to do. One of the things that wasn’t on my list today was to support the local Hilton Food Shelf.  My mom helps the food shelf and has done a great job of setting an example of giving back to the community through her church as well as through the food shelf. At her church, she has spear headed Undy Sunday several times, helping our community get things like underwear, things most of us take for granted. I want to be helpful within the community. I took it as a sign when I went into the grocery store, that I needed to purchase the things on the list, that one of the food shelf volunteers handed me. I don’t normally shop at that particular store and so I felt like I was placed there to help. I carefully picked out items that may be less likely to be purchased by others. Dish detergent, clothes detergent, tooth paste, paper towels, shampoo, deodorant. How do yo...

TGIF! Fridays can be hard to get through. I am tired from the crazy week and mentally exhausted usually too. We have dinner with family which was so delicious and comforting. When I got home from work, I made a list of things for me to accomplish this weekend. It is a tough list but I will try my best to cross all the boxes off. I finally was able to gather all the appropriate documents, medical history for SSA. They sent me a pre paid envelope to return the pile of paperwork that is as thick as a phone book in. I ended up braking the envelope on the seams and taping that sucker shut with many pieces of shipping tape. I am either going to impress someone or piss someone off with my problem solving skills. I have my comfy cloths on and a fan in the window. I am planning on sleeping like a log.

Today was busy at work.  I was assisting in surgery today. Sometimes the beeping of the machines make my eyes twitch and cause unreasonable annoyance. I am working on subsiding my PTSD of repetitive noises and dinging of machine alarms. Tonight was dialysis. The machine only really had one temper tantrum that was due to an oversight I made.  Oops. Luckily no Ethan’s were harmed in that mistake. Ethan was excited as he was coming up with new tee-shirt designs and bracelet designs for his “Merch”.  Both of his contacts fell out so his eyes were bugging him when I got home. He looked like he had been weeping all day with his eyeballs as red as a fire truck. I replaced the missing contacts with new bandage contacts and hopefully the redness will subside. I can still see the area of opaqueness where his keratopathies are in each eye. Yet another casualty of life handing us limes to make lemonade. Everyone knows with Limes…you can make margarita’s instead….with a side of kerato...

  Ahhhhhh a day off. I of course started my day off with coffee. I then drafted a letter, listed all of Ethan’s doctors complete with addresses and phone numbers. Made some more copies of medical records and it took me all of only a little over 2 hours.  I had to drop off some water and dialysate samples to the office across town. This is how they make sure that Ethan’s dialysis treatments are most effective. I picked Ethan up from his college lab.  When we arrived home, we started dialysis. While on dialysis, we had a zoom call with Ethan’s hematologist. Ethan’s neutrophils  are dipping low. The neutrophils are like the soldiers of the immune system. This puts Ethan at risk for picking up more infections. The normal range for neutrophils is 1.8 -5.4. Ethan is measuring in at 1.2. If he dips to 0.5, a fever or infection becomes life threatening because there are no “soldiers” to fight the infection battle. His immune system needs a draft. Ethan’s hematologist is thin...

Ethan’s arm is still a bit swollen but isn’t bothering him to much. When I came home for lunch he was editing a YouTube video, which he loves doing. I got another call from collections today at work. I tried to explain to the lady (or man it was hard to tell), what was going on with our insurance. I kept having to say “hello, are you still there?” Because it kept sounding like they hung up. They would answer with “yea” but didn’t say to much. It was clear they didn’t want to talk to me even though I am exactly the person they need to talk to. Sigh. I can only give the information. They chose what to do with it.  I will have to send more emails to the lady that is dealing with this issue tomorrow to see if there has been any progress working through this. We have the letter of preauthorization stating the coverage but somehow we got billed inappropriately anyways. What a nightmare. It’s so frustrating. No one really talks about the insurance nightmare that comes along with having a ...

Ethan woke up today with a sore arm. Covid vaccine #3 has not been kind. Ethan is now taking acetaminophen for the next few days to make him a little more comfortable. Poor kid. His swollen arm did not keep him from going to his Co-op today. He still went for part of the day despite his sore arm. Today wasn’t overly exciting. I made some copies of the medical papers that were requested. They also want names, addresses, patient id’s and phone numbers of each doctor. Since he has a trillion specialists…this will be especially fun to Google. The space they provided for the information is a joke. Mine will be typed and added as a separate source of information. I am stuffing the envelope with as many medical records as I can possibly fit. After work, I came home and started dialysis. I was a little late so dialysis went a bit later tonight. Mondays are so…..Monday-ish.

We hadn’t gotten the mail in a few days. Life. Anyways….I got a document from the social security office saying that they need more information to see if Ethan would be considered “disabled”. According to their website “  Chronic kidney disease, renal failure, and kidney transplant surgery all qualify for  disability benefits  from the Social Security Administration (SSA).” They need “proof”. So I had to fill out a 12 page document. One of the pages was to list all Ethan’s medications. There weren’t enough lines. I wasn’t able to finish it because they want all medical records, names and addresses of all his doctors in both NYC and Rochester as well as New Jersey. I did not have a happy face on when I was reading it. The amount of paperwork that needs to be completed is equivalent to a Forrest of dead trees. Ugh! Ethan got his 3 rd covid shot today. I also did dialysis and infused him with some iron to hopefully offset his arm hurting and feeling tired tomorrow. Next up, ...

Ethan is gaining weight. He weighed in at 113 pounds the other day. He is eating like a champ. Today he had a big day. He went to Cars and Coffee at The Little Speed Shop which is a staple for Ethan and Paul. Ethan carried around his gimble and camera for a couple hours. He then had his good friend, Ryan, over and the two of them rode their quads on our field. They rode fast and Ethan was pulling off moves he used to do before transplant.  Paul was so delighted to see Ethan enjoying the things he used to enjoy, and being able to physically do things he wasn’t strong enough to do a few short months ago. Meanwhile Avery started her first job today and worked 4 hours. She had fun and promptly fell asleep. I was glad she was taking care of herself. With her full schedule at school and this, her plate is quite full. I did more food prep today so we have some healthy lunch and dinner options for the next couple of weeks.  The weather is cool tonight and we are sleeping with the wind...

We got another clearance checked off the list today.  Neurology signed off on Ethan to have his kidney transplant. Slowly picking away at our list as we wait for the government to approve our Medicaid and Medicare.  When I got home from work, Ethan was fast asleep on the couch. One thing we have noticed is that he is a VERY sound sleeper now. The dogs were barking their brains out and Ethan slept very peacefully through that chaos. We started dialysis and Paul came home from work. We chatted and he was asking what my plans were for the weekend. I told him that my goals were to trim the hedges and tree out front, do meal prep and take the kids to get Apple fritters. I had other goals but those were the ones most important. As Ethan, Ferguson and I did dialysis I heard a familiar sound. I went outside sobbing. Paul had trimmed all the hedges and tree for me. This is usually something I do but time is something I don’t have a lot of. It was such a nice gesture and I was so apprec...

 Happy Birthday to my good friend Carrie. We attended a birthday gathering for her tonight. The beauty of home dialysis is that normally I do dialysis on Thursday’s but we pushed it off until tomorrow….because we have that flexibility. It was nice to see all of our camping friends again, even though it hasn’t been quite two weeks since the last time we all camped together. We are another day closer to transplant….we just keep moving forward.

 I spent my day off researching how to find the lady that took over our case at our insurance company.  The lady that was working with her s sent a password protected email only giving me the new lady’s first name and first letter of her last name. I keep getting phone calls from the collection agency. They want to talk to Ethan. When I explain that they want to talk to me, they say they can’t. They want Ethan’s phone number but I told them he doesn’t have a phone and they can call back when we are together anytime after 6pm or on weekends. Ethan has already given a statement that it is ok to talk to me, but apparently this needs to be done each time. So annoying. Oh yeah, we have a preauthorization letter from the insurance company saying they would pay these charges so it never should have gotten to this point. Not annoying at all. I also started researching places to stay while we are down in NYC. I can’t imagine living there when a month’s stay is quadruple our mortgage. ?...

 After work today we ran some errands. Then Avery and I took the dogs for a walk in the field. We saw several deer. Penny thought she was chasing one. She wasn’t. It was already running away from us. She got within about 30 yards of it and retreated because she got nervous. What a scaredy cat. Phineas also saw 3 deer. They spotted him as well. They stood for several moments, still, eyeballing each other. The deer finally decided to run away when they saw phineas’s tail wagging. It was fun to watch. Ferguson, my gentleman, rolled in poop. I am so disappointed with his rolling in poop obsession. He got a bath in the sink. Other than poop rolling he is a good boy. Ethan was working on his homework tonight. I am glad he is feeling well enough to keep up the momentum.  Paul started up bowling again. He is happy to get to see his friends each week in person again. We are hanging in there.

It was a Monday. It’s weird now that Avery is back to school. I looked forward to seeing the kids at lunch time. Today was just Ethan, which was good too but I miss Avery being there. After work, dialysis was started. It seemed to just go on forever. I slept 10 hours last night and still feel tired.  Side note, Ferguson has figured out that he is privileged. He knows that when Ethan’s dialysis machine does a certain series of beeps, that it is time for him to run upstairs for dialysis. Ferguson likes when Ethan has dialysis because Ethan shares his snacks with Ferguson. Ferguson respects that he has to be quite gentle. Ferguson politely waits for yum Yums to be shared with him. He is such a gentleman. After dialysis, it was time for bed. Our glamorous life. Still not a peep from the state about insurance. Boo!

Multiple margaritas got me this morning. I was not feeling too swift. I can’t handle playing with the big kids.  We spent some good time with our friends this morning and arrived back hone mid afternoon.  Dialysis was started and then finished and I was ready for bed. My plan is to go to sleep as soon as possible.

 9/11 is a day that signifies significant loss, but also the unity of our country. I think we all took moments today to remember those lost in such a horrific tragedy. I still have anger that so many people and hero’s lives were lost 20 years ago. On a different note, Paul and I had a fun weekend. We got to see people we have not seen in a couple years due to life situations and the stupid pandemic.  We had a normal weekend. A pre covid, pre-transplant type of weekend. Our view was spectacular. It was nice to sneak away.  Although weekends like these usually leave us more exhausted than refreshed, we will have the fond memories for years and years. These pictures were from the view of our balcony.

 Paul and I are excited to visit friends. It will be a slice of normal. One of my BFF’s, Heather, will be at my side. A partner in crime. Mischief will ensue.  Heather has been one of my rocks. She has carried me on her shoulders many times over the last year. I am so glad to see her and spend time with her. My heart is warm with all the old and wonderful friends we will be meeting up with this weekend.

 The day started out at 3:45 am with dumb old Penny barking her stupid but beautiful brains out. Why? Who knows….it’s Penny. She really doesn’t have a thought process. If she were human, she would be the equivalent to Paris Hilton in the early 2000’s. I tried to ignore it. I put a pillow over my head and fell back asleep. But not a good sleep….a jerk myself awake every 5 minutes sleep. I finally caved, got up and let her out. Ugh! But damn she is cute. She was so happy to see me. How do you not just smile at her vacant, empty head? She is always so happy. Ignorance is bliss. Full day of work. Came hone to do dialysis. Treatment once again extended almost 60 minutes longer than normal. Ugh! I get 25 minutes while I am priming the machine to make something to eat and do any tasks I need to do. Then it’s up in Ethan’s room for the rest of the evening. Then once treatment is over, I have to break everything down and reload for the next treatment in whatever capacity that may be. This i...

My Avery started 11 th grade today. She looked adorable. She didn’t want me to hold her hand and stand with her out to the bus stop. I don’t know why?  My dialysis center has punked  me. They punk me every month. I have to draw and submit lab work via FedEx. The directions are “easy”. Schedule a pick up and leave the package outside. Easy peasy. I went online to schedule the pick up. It said I had an invalid tracking number, even though I copied it exactly and checked it three times. Fine! I call. Even though I don’t want to. I called and talked to the BOT. Gave her all the information. Had to repeat the spelling of my last name 4 times. I was shouting it even though it is apparent that the volume of my voice wasn’t the issue. I finally get to the end and they want to actually SCHEDULE the damn pick up. Phew! Then the BOT says “there has been an error, please hold for a representative.” Are you KIDDING me?  Then I speak to someone that English is either their 5 th or 6 th...

 Ethan got his blood drawn this morning. His tacro level still hasn’t come back which is a little odd since that was the most important test he had drawn.  I am waiting forever the complete blood work so I can forward his levels to his transplant team. At lunch I picked up 9 of his refills at the pharmacy. Juggled those out to my car.  After work today, I was able to go home and do very little. It was great. I hope more quiet days are in our future.

We have been camping off the grid. Our service is terrible. I have not been able to blog. All is well. We spent time together with great friends. Thank goodness we can do dialysis camping. It has really allowed us to live this summer. I did have to work Saturday and Sunday. But we are enjoying the time together as we continue to move forward toward moving apart again. Divide and conquer. It seems to be the transplant life. We will get there and get this kid back to feeling normal again. We went to listen to live bands and ate dinner. Ethan was upset because he tried to branch out and do something he doesn’t normally do. It was rather crowded and he felt uncomfortable. That turned in to straight up crabbiness. He was in such a foul mood.   At dinner Avery drew a tattoo on Paul’s arm. He wasn’t sure what she was doing. He knew it couldn’t be good because she was laughing in an evil way. The picture is below. And yes…..Paul got made fun of for the rest of the evening. No idea where sh...

 Today went pretty well. The phone calls were at a minimum. Emails were at a minimum. Life felt normalish. I went and completed my last box to check. Went to the OBGYN and got my IUD out. We now have to wait 6 weeks for transplant. Which will be just fine since we are waiting on Medicaid and Medicare. Ahhhhh waiting for the government…. Likely will take longer than 6 weeks and I expect probably more like November or December. Six weeks puts us at October 15 th. It is highly unlikely we can push through both insurances in 6 weeks without some tiny miracle. We will try to be patient and let life work the way it is supposed to. When I got home, I walked in the house and Ethan looked so much like himself. It was the first time I had seen him in his jeans since last November.  It was so good to see him looking like himself. He had a flannel on and smiled. “It’s flannel weather” he said.  He does like his hoodies and flannels. Yesterday I melted a scented wax tart that smelled ...

I woke up this morning and got ready for work. I had some time before our first phone meeting. I have a stack of paperwork waiting to be completed and retiring to the social security administration. I tried to start it last night but it was after 7:00 and really my brain becomes significantly less effective after like 5 or 6. The words were blending together and I just stopped. This morning I got it done and signed. It is ready to be mailed and I feel good about that.  We had our 7:30 appointment and it was not really that helpful. I sat home and waited for my 8:30 zoom appointment, losing time away from work, and at 8:35 got a call from the office saying the doctor was caught in traffic and it was rescheduled to 12:30.  Annoying, but not really anyone’s fault. With the ridiculous weather they are having, it is no wonder why she was late. I couldn’t even really be upset. I was glad she was still able to meet as she is another box we have to check off to get Ethan the green lig...

King Midas had the golden touch. It seems today, I had the crap touch 💩. My brain must be quitting. I had to print a paper and submit it to SSI, the paper was password protected and I had to reset my damn password like 7 times settling on a swear word as part of the password and a damn @ sign. I finally accessed the paper only to find that our WiFi connected printer wasn’t actually on the WiFi. So I had to go to a computer directly hooked up to the printer which was on a different floor and do it….but only to log into my account and find, it didn’t like my swearword password with the @ sign. I reset my password yet again ( did you know it doesn’t accept middle finger emoji’s as a password?). Went to get set up for dialysis today, I had made a new SAK (which takes 6 hours to procure) last night over night.  (I am withholding my inappropriate comment about that word).  When I went to prime the cartridge, the PAK expired. You have to change it every 3 months. The machine had me ...