Ethan’s Journey

We have been keeping an eye on the weather this week. I reached out to the transplant team because it seemed like we would have to drive in some crappy weather for the biopsy. They were also aware that Friday is his birthday and it was very important to us to do nothing medical on this day, including traveling. Ethan’s lab work from over the weekend had improved a little bit. I asked if we could either do the biopsy Tuesday or Wednesday before the craziness of the storm. With his bloodwork, his transplant doctor decided it was ok to push the biopsy off until next week. She really does care about him and I do like how well they work with us. We are waiting to hear about a date for next week. This change in plan also changes Ethan’s anti coagulation plan as well as reschedule the covid test. I spoke with the hematology office to get the plan. I had an appointment to have my IUD put back in today. Wow! I forgot how uncomfortable that process is. I had some intense cramping as I got myself...

 Ethan got his wish today from Make a Wish. He wished for a new computer. Not just any computer, a computer that he can use for editing his YouTube videos. He will be uploading more videos that detail the transformation of his car. Between YouTube and his merch store, his videography jobs and lawn mowing, he has been able to save up for parts here and there over the past several years.  He was so excited about his new computer. His face was so bright and he was beaming. It was a much needed interruption from the medical stress as well as schoolwork he is doing. He has to miss class this week for his biopsy. We are trying to reduce the time he misses as much as possible. Paul and I had a date in our dining room this evening. He was away snowmobiling and arrived home this evening. We decided that I can’t do long trips anymore because of my back. Figures. 

Today I rested my back. It is a bit sore. Snowmobiling probably wasn’t the best idea the other day BUT my incision didn’t hurt at all so that is good.  Ethan and I went to the lab for his follow up bloodwork. His creatinine came down a little bit as well as his potassium. Both are still high but going in the right direction. I created an email chain looping everyone in (hematology, nephrology etc) to develop the plan for next week. This is so convenient and I get answers right away which I LOVE. The biopsy is a go. They will anesthetize Ethan, make a small incision and take a teeny tiny piece of his kidney. They will stick him back up, make him sit there for 4 hours so they can draw his blood to get a hemoglobin level to make sure everything seems stable for him to travel home. We will then load him up and drive back home so that he can be in his own bed the next morning, his 19 th birthday. This year I told Ethan we weren’t going to celebrate his birthday in the hospital. This yea...

I FINALLY got my Paid Family Leave approved. What a process of intricate headaches that was. I feel like I am on cloud 9. Wow! I still am trying to get my disability approved for the time I was out for my surgery. I did follow up today and the company is waiting on paperwork to be filled out. So we will see how that goes. We had a meeting with SSI to see if we were doing anything shady since the last meeting. We go through these every few months. Ethan was able to answer all the questions with minimal help. This makes me feel good because it shows that he has been learning more of the stuff that he will be taking over at some point. Avery had her covid booster this afternoon. She is a champ with needles so it went fine. I consider getting my Paid Family Leave approved my big bright spot for today. Not that there was any doubt, it’s just with all the set backs….it was annoying. 

In all the excitement yesterday, I forgot to include I called (again) the company that pays out paid family leave. They had told me it would be 15 days before they could do anything with payment. A friend let me know that the department of labor states there should be a 3 day turn around time. Companies bank on that people don’t know this and take their time until you tell them you have contacted the department of labor. When I spoke with the First Lady, I told her I had called on Wednesday and was told about the 15 day holding period and let her know that the department of labor said she t should be a 3 day turn around time. This woman said that I would get a call from the case manager in 48 hours. Within an hour I received a call from the case manager. I explained what was going on and she started telling me that I didn’t fill our t a spot on my paperwork for a bonding date. What is that? I asked her to explain what that means. She starts asking “when was your son born?” I told her F...

Ethan had his appointment this morning. We snuck up to see one of his favorite nurses. It was so good to see her.  Then Ethan had to go to an ultrasound appointment. The reason for this is because last week Ethan’s creatinine (kidney marker) was high last week. His doctor didn’t want to screw around and was worried Ethan had a narrowing in his ureter from where his stent was. We were excited because we saw another favorite nurse when Ethan was in the waiting room for his ultrasound. I felt like I saw a celebrity. It was so good to see him and Ethan was so excited. We made a scene as we were like excited little girls hugging and squealing….all 3 of us.  Turns out, the ultrasound looked good. There was no narrowing in Ethan’s ureter. The profusion in his kidney was good meaning the blood was flowing well and all areas were getting oxygen. As we made our way home, we got halfway through New Jersey and the phone rang. It was Ethan’s nephrologist asking if we had left yet. I told h...

We left for NYC with snow flurries in the air. The closer we got to Syracuse, the more snow was falling until we had zero visibility for about 20 minutes.  Kept following the tail lights of the guy in the vehicle in front of me hoping he stayed on the road. “How much longer will we have to drive through this?” I asked Ethan as he was checking the weather app. Luckily it didn’t last too long. We had flurries for about 2 hours of the trip. The rest was mostly sunny. After driving 6 hours, we finally made it to the hotel. I hate driving. I noticed that the hotel had a bar in it. We WILL be staying at this one again. My margarita was DIVINE! We ordered food and put the tv on. Our room is nice and has a L shaped couch to spread out on. Ethan found an interesting show called “Strange Evidence” that is pretty interesting. I was ready for bed by 7:30. Ha! 

 Today was full of getting things done. I crossed many tasks and chores off my list. I also went on a very chilly walk in our field, looking at all the animal tracks and trying to guess what made them. There were small, medium and large tracks. The crisp frigid air just about froze my eyeballs open. Ethan had his first day back to MCC. He didn’t really talk much about it which is good I suppose. Tomorrow we leave for NYC. I am picking Ethan up from school and away we go. I know Ethan just wants to get it over with. It should be easy. Just a check up. It will be the shortest part of the entire trip. Luckily Ethan is feeling good. He looks like he has put on weight. Now that everything works…his body is thriving. I dealt with the 8, YES….EIGHT! Letters from the collection agency that the insurance company is still trying to sort out. I was feverishly emailing my contact lady at the insurance company. They are bills we don’t owe in….they were just not paid correctly because of a combi...

Today was haircut day. I did both Ethan and Avery. Tomorrow is Ethan’s first day back to school.  Everyone looks spiffy….except me. I had to postpone my hair appointment due to stupid covid. The last time I had a cut and color was November 9 th. I have a nice crown of grey roots working.  My 10 days for covid is up in 3 hours and some change. I made sure to avoid people for 10 days instead of 5 just because. My chin hurts from the constant mask wearing. I am ready to give Avery a big hug tomorrow. I have stayed away from her since she has been home. We did play The Office trivia game today. It was really fun. Ethan didn’t play but was still in the room for the questions and it was nice to spend time with them both. This was my brightest side today. Plus I learned some new Office facts.  Paul was snowmobiling for most of the day. He was in his glory. Tomorrow, as I have grandiose plans of dropping a letter off at the post office (the outside mailbox) and going to the bank....

The funny thing about groundhog’s day…it just seems to be better when you are home. I did some meal prep today. I am trying to put healthy options in the freezer.  Paul and Avery went on a snowmobile ride today. I had wanted to o but my back still hurts from shoveling the other day. Since I have to sit in the car for 12 hours round trip on Tuesday/Wednesday I figured I would like to be somewhat comfortable. Ethan will ride the snowmobile tomorrow. 

As Avery left for school this morning she calls out “Bye Mom, I hope your day is good even though I won’t be here.” And just like that…..a smile came to my face. She’s pretty funny. In bird feeder news, the squirrels have told their friends about all the food available. One squirrel was showing off doing his upside down P90X sit ups while eating sunflower seeds.  Quarantining is no fun. I am sick of wearing a mask in the house. I am ready to be done with it. Monday is the magic day. Just in time to go to NYC Tuesday for Ethan’s Wednesdays appointment. I am now conditioned to be so careful and actually have anxiety regarding this. I avoid stores. I avoid crowds. I try to be cognizant of who has been around someone that may have been in contact with someone positive. I try to evaluate the risk of someone that I will be around. It continues to be a huge source of anxiety for me. Paul doesn’t seem to share my level of cautious ways. It’s not that he isn’t cautious, it just isn’t the sa...

I received word that the insurance company that I tried to submit my disability insurance claim to is not the correct company. The insurance lady contacted me and let me know that my claim was not going to be processed and that I would have to check back with corporate to see what the next step is. I checked with the corporate and found the name of a company I could “try” to apply to but likely my claim will not go through because of our acquisition date. I then researched the top members of our corporate business as I would like to write a professional letter to them letting them know how difficult this process has been. Maybe they can make changes to their protocol. Perhaps in the future any other businesses that they acquire, somebody won’t have to go through this again. I would really like to make sure that they know what a hardship this has caused. If anything, I feel as though if I can make it better for someone else, I helped in some way.  I will remain hopeful but have acce...

I continued my fight for paid family leave today, trying to find out what the hold up is. Good thing I am not depending on this to eat or I would have starved a long time ago. I also was told that I don’t qualify for short term disability for my surgery because my employer sold our company to corporate and that because of the time the acquisition was, my surgery wasn’t covered by either the employer or corporate. This doesn’t make sense to me. So I am actively still trying. Ethan had his lab work this morning. They had wanted him to get a covid test. Ethan questioned why? He is not having any symptoms. He doesn’t feel sick. He just doesn’t want to get unnecessarily swabbed, poked or prodded.  When I asked the doctor about it, she said we could skip it unless he started having symptoms. Avery came home. This was my bright side. I have completed the 5 day quarantine. I will remain extra cautious for the next 5 days so I don’t pass my covid to anyone.

Another sunny day today. I spent the day unpacking and cleaning with some resting mixed in. I was able to go through our pantry and throw away expired food.  I didn’t have time for that when I was doing dialysis. I am so happy dialysis is a thing of the past. I have gained so much more time. I didn’t realize how stressed I was. I really had to manage my time well to get it all done. Tomorrow it’s off to the lab to see how Ethan is doing with once a week labs instead of twice a week. Wish us luck.

Well today Ethan kicked some ass. He has been working on constructing a huge desk in his room. We got spanked with some serious snow. It was time to go out and ride the snowmobile. Ethan was a crazy man on the sled. He experienced some great physical therapy. He also got the sled stuck so he and Paul worked together to get it free. He was laughing. It’s all part of playing in the snow. I rode the snowmobile around the field several times until my arms were tired. I am out of shape and older. I did not jump the sled. Ethan showed his new heart and kidney a good time today. That makes me so happy.

I was asked to post pictures of the table Paul made for me. The coolest part of it was, that I saw the bumper pool table posted on Facebook before we left for the kidney transplant. You don’t see them often, so I thought it was cool. It was being sold by a friend I graduated high school with. Such a small world. Paul asked me if he should get it. I told him NO, because life was chaotic enough. Paul didn’t listen. I am not mad like I normally would be. His creation is amazing. I was also thinking about the bright side of covid. We have been avoiding it for so long. The bright side is that I got it when Ethan finally has all organs functioning. Phew. If he got it in 2020 he would have been a goner. So as much as it sucks, I am thankful of the timing. Ethan reports he still feels fine. He worked at putting together his desk today. He was excited he was able to “tinker”. I can notice a difference in his stamina and drive. I also noticed how much I love the natural light. Today was so sunny...

We put our masks on and departed the city. It felt like the handcuffs were coming off and we were allowed out of the prison of apartment life. Ethan and I were talking and besides our appointments, we felt like our sole purpose was to exist and wait for the time to go to bed just to get to the next day….everyday for the past 7 weeks. We would do mundane tasks, mostly without daylight, unless we went for a walk, but once it became cold out, we didn’t even do that much. Lack of natural Light and small square footage made life not so fun. It was necessary, but very difficult. It forced us both rest and we were close to the hospital. We sat in the car on our ride home and while it was cold, the sunshine was out. I can feel a difference of being mentally so excited to go home. Our family and friends have been such a help with all of our medical shit show. It is so nice to have an army of people on our side to help us. Little things like funny memes, texts, words of encouragement, and commen...

I woke up this morning with Murphy’s Law sitting on my chest. My ears are plugged, my throat is sore….YOU have GOT to be kidding me! I immediately blamed the 5 hour wait the other day. Ugh! Whether I have covid or not, Ethan and I have been in close proximity. So he has been exposed. Paul is walking into a war zone. He is bringing a covid test with him. If I test positive, he will have sacrificed himself for the greater good. Ethan and I are so mentally exhausted by being here. There really are only two windows one on each end of the unit. We usually can’t tell what time it is outside and it is driving me bonkers. As the day went on, the more worried I became because my cold didn’t seem to be easing up. Paul got into the city and drove around for probably over an hour looking for a place to park. Finally I found a parking garage a little ways away and he was able to park it there. It is about a half mile away. As soon as he arrived I took the covid test. It said that if you see two lin...

We arrived at the hospital in time for our 8:30 appointment with Ethan’s surgeon. Our 9:00 appointment with the nephrologist came and we told her we were supposed to meet with the surgeon (same location) and he hadn’t come in. Around 9:20, they told me the surgeon would be in at 10:00 and the 8:30 appointment was a snafu. So we waiting the additional 40 minutes. He hadn’t showed and by 10:15 I inquired about what was going on. Ethan hadn’t eaten yet and he was overdue on his medications. 10:35 the surgeon arrived. He profusely apologized. But Ethan was pissed. Luckily the appointment went well. Everything has healed well. Ethan’s kidney numbers look great and we can hopefully come home. We have to leave Rochester on Tuesday for our Wednesday appointment, but I was able to get approval for alternating in person visits and video visits with labs taken at home. This is a true win on our part. I came home and took a nap. This week kicked my butt a little.  Ethan put the finishing touch...

Round two: Heart Biopsy today We arrived at the hospital and checked in to get Ethan’s bloodwork. I arranged ahead of time for nephrology and cardiology to put their lab orders in all for today so Ethan wouldn’t need to get bloodwork again tomorrow for our nephrology appointment. I asked the check in lady if I could review the labs to make sure all the orders were put in. The nephrology orders were missing. We left the check in area, went up to the 11 th floor, nephrology and asked for the orders to be put in. This extra step cost us some time so now we were running late. As we were back checking in to get our papers from the lab, one of Ethan’s 9 Tower doctors walked by, stopped and came in to say hello.  Ethan didn’t remember him, but I sure do. I even told Ethan that he really liked Nintendo and had a Mario brothers ringtone on his phone. We went to the lab. It was hotter than hell in there. I had to wait outside it was so hot. Ethan got his labs (all of them) and we went to the...

I decided if Ethan can’t eat after midnight, neither could I. We can both be grumpy together. We got ourselves ready and arrived to the hospital right on time, noon. We were taken to surgery. SURGERY. What? This was supposed to be a “procedure”. Short and sweet, entering through his man parts, a quick tug and that’s it. Then they start talking about anesthesia. Ethan immediately shut down and refused to put the gown on.  I asked for someone to come in and explain what was going to happen. Again, when it was explained to us, there was no sedation or anesthesia required. One nurse came in and tried to answer questions, but he was dancing around the questions and would say, “the surgeon can answer that.” Or “the anesthesiologist can answer that.”  Well….go get them then. I felt very tense but remained kind as it was not his fault. I get silly. Like I should have known there would be more. Maybe I should have asked more questions to manage our expectations better. The nurse left t...

So we are down to the final countdown to go home with stupid covid trying to grasp at us with it’s dirty claws. Threatening to lengthen our stay here. Every ache, sneeze and tickle in the throat causes panic for not only myself, but for Ethan, Paul and Avery too. Normally, we wouldn’t care so much if we got covid because we are healthy. But throw immunosuppression into the mix and it is a wild card. We don’t know what would happen if Ethan got covid. Hopefully now that he has antibodies, he could at least stay out of the hospital.  Maybe? The hospital would be a disaster. If we are in Rochester, he likely would not be able to have me stay with him.  Right now we are scared of everyone. Paul and Avery are doing their very best to stay away from people, stay masked and wash their hands. It is easier for Ethan and I. We just stay put in the apartment. Avery is daily thrown to the wolves. She is walking the halls of her high school with covid dancing around her and taunting her, g...

Ethan and I had another quiet day. He is in a frenzy to get all of his work turned in. He worked for a few hours on it this morning. We are prepared for a busy week. Tomorrow and Thursday are his nephrology appointments and blood draws. Tuesday is the stent removal. Wednesday is the biopsy, EKG and Echo. Out of the entire lineup, it’s the echo he hates the most. It is painful for him. The last couple of times his echo lady has been the same. She takes forever and has to repeat several shots. She also doesn’t seem very empathetic about how painful some of the shots she does are for Ethan. We both hope he gets someone different. We are both planning on not being able to go home on Saturday. It is a coping mechanism. But we are both just worried it won’t happen and we will be so devastated. Our bright side is that we both were able to sleep in today. We didn’t have to be anywhere. We didn’t have to go to the hospital. That is a good thing.

Today we had to be at the hospital at 10:30 for covid testing. They made us stand in a social distancing line until 10:50. Then they had us go in, like cattle, and sit down at our “private” booths respectively. Our nurse was nice and up beat. Ethan got his test and back home we went. We were gone about 45 minutes total.  We then went to the grocery store around the corner. The stores are so small. The aisles are so narrow. They were stocking the shelves which takes up even more room with all the boxes.  We went to stand in line for the cashier. There was only one cashier and we were 10 people back. Ugh. We stayed way far away from the guy in front of us. The lady behind us was practically touching us. What the hell???? We walked back and it was sunny out. The sun felt good. Our upstairs neighbors are super loud when they walk. We call them the “Boom Babas”. We don’t really know what they look like but we have deducted by the sounds they make when they walk, that they are extre...

I woke up this morning and there was a couple inches of snow on the ground. It was really pretty. But a couple inches in NYC is a little crippling. We made it to the hospital on time and Ethan got his lab work done. While in waiting for his lab work to be drawn, 11 floors up, our coordinator was calling me because our doctor was not going to make it in for Ethan’s appointment. We rescheduled for the middle of the day as a video visit. No big deal. We did our video visit and there were some white blood cells in Ethan’s urine. This was concerning to the doctor because of all the involved appointments next week. The stent removal, the biopsy. These are things that they would not want Ethan to have a urinary tract infection for. So they asked us to come back to the lab before it closed to get a urine culture to make sure he doesn’t have an infection.  Ethan wasn’t feeling like being compliant. I was asking him to drink so he would make urine. He said he was, but I don’t think he was gi...

 Another day is over. We are one step closer to home. We are just treating every day like ground hogs day. Ethan worked on his college work trying to get things turned in to try and pass his 1 st semester of college. Light cleaning, laundry and binge watching a show with Ethan. As days get closer to us leaving, I am worried that Avery or Paul will get covid and delay us. It would really suck. Ethan keeps saying he can’t trust anything. Everything always goes wrong. However, I keep telling myself, it will work out the way it is supposed to. I am so glad he has the antibodies. 

Today was the day we had to be to the hospital for Ethan to get his antibody injections in his butt cheeks. He hasn’t really complained that he is sore at all. We had to wait an hour to make sure that he didn’t have any sort of reaction. We then went back to the apartment. We started binge watching Manifest on Netflix. It’s pretty good. We both got into it. It was a quiet day. 10 days left (as long as covid doesn’t screw it up for us.

 We went to Ethan’s appointment this morning. He is checking out good. His incisions look good, he is healing nicely. His bruising has subsided. He is up to  123 pounds. He looks good. We came home from his appointments. We did the usual homework/tv routine. The day was boring but we stayed away from people to stay safe from covid.  Ethan did not have his antigen injections today. He has to go to the infusion center to get them and they had an appointment available for tomorrow.. His lab work came back that his white blood cell count was still low so we had to discontinue his antiviral medication. He has NORMAL platelets. That’s one time in a row. He is not anemic. Wow!!!!!!  His kidney values are normal. So the alarm is set and we will be arriving to the infusion center tomorrow at the hospital to get Ethan some antibodies for covid. We have to stay for an hour afterward for the team to monitor Ethan for signs of anaphylaxis.

 Nothing exciting happened today. It was boring. Ethan did schoolwork. I worked on the computer paying bills and filling out paperwork. Tomorrow is another nephrology appointment. Same crap different day.

Ethan worked on his homework today. I cleaned, did laundry, dishes and felt like a functional member of a household. We went to the grocery store. It was about 55 degrees out so it was a nice comfortable walk. The grocery store only has 5 aisles. We are quick when we are there because social distancing isn’t very easy in there.  The line to Uber the care had at least 50 people lined up outside. Eww. We stayed away from that cesspool. I worked on the computer while Ethan played on his PlayStation.  It was a quiet day. My bright side was that Ethan has been in good spirits. This makes me feel so much better than a few days ago. 12 days left after today.

 It’s 2022 and everybody has big expectations for this year. Everybody is hoping that is a happy, healthy and easier year than the previous two, especially us. 2021 wasn’t terrible, we ended with a healthy kidney and no dialysis. We have had quite the ride, but I think of those that have it less fortunate than ourselves. Ethan and I had a restful day. I get well enough to walk to Walgreens. It’s not quite a mile walk. I picked up a few things. It was drizzly out but warmer than expected for this time of year.  I watched tv as Ethan worked on homework. We ordered dinner. I ordered a Greek salad and have become fond of the little grape leave wrapped nugget of deliciousness. When the food arrived, it had what looked like leaches on it. Ew! It was brown and rugged looking. I had a terrible face on as I was assessing what they did to my salad. To my horror, I realized it was some sort of fish. Sardines? It looked dirty, smelled like what one would imagine a diseased whore house wou...