Ethan’s Journey

Today I was feeling a little bit tired, run down and crampy. My appetite was non-existent. I napped ALOT. The doctor said these days would happen. My kidney values are elevated until my body regulates and I will have days like these. They won’t even check my levels until 6 months after surgery, because they will be elevated. As the day went on, I felt a little better…just super tired.  Ethan had a good day. He has been working on another YouTube video.  I was sad to see Betty White died. She was a wonderful talent.  Cheers to hoping 2022 is a little bit kinder to everyone.

This morning I spent the majority of the morning (after going to the lab) calling insurance as well as the hospital finance department to resolve some unpaid claims from over a year ago. So frustrating. This process is not for the mentally weak. I swear things are just as hard now as they were a year ago, just in a different way. Ethan is becoming increasingly more upset, angry and frustrated with his situation. Today, the hematologist shared the plan for the daily injections to start up again as the days get closer to his stent removal and heart biopsy. They don’t want him bleeding out during the procedure.  He. Was. Pissed. The hematologist spent 50 minutes with us coming up with a plan that is safe. The injections seem to be the only way even though they are well aware it is traumatizing to him. I tried listing every oral possibility I could think of and each one was eliminated because of interference from one of the drugs he is on or it is toxic to the kidney. I really tried hard.

Paul and Avery left today. We had fun with them. It was sad to see them go, but nice to know we will be home in a few short weeks. I miss them already. Paul makes me laugh. I miss him. Avery is a delight and I miss her too. She and I played games on their commute home.  Ethan had a tough afternoon emotionally. He feels like he is in jail and hates that he still has to do school work. He is just overall pretty miserable with the situation. This means I also had a rough afternoon emotionally. We talked about how he has the choice of feeling better and he just needs to choose therapy. Again, he is refusing.  Luckily his friend reached out to him and they spent time laughing and talking on the phone and it meant the world to him. I was beside myself not knowing how to fix it and spent time on the phone with my friend. Friend therapy was so important for us both today. Tomorrow is lab work and hematology appointment. We will develop a plan for Ethan’s Coumadin for when he gets his stent rem

Today we went to Central Park. We explored the southern half-ish of it. We entered through Strawberyy fields. We walked around The Central Park Lake and went to the Bethesda Terrace. We walked underneath the bridge and there was a beautiful underground area with ceramic tiles on the ceiling and paintings on the stone walls. There were two men, one playing the cello and the other playing the violin. They were playing Christmas music until this dumbass guy walked through with his boom box playing some horrible song and the loudest setting. This guy looked disturbed. What a jerk to interrupt the live music with his crap music. We saw bridges and arches and felt like we were walking in nature. We got home and watched the movie Don’t Look Up.  It was scary how easy this story could be true. One day closer…..

I remember when my kids were little the silly cartoons they would watch. My perverse mind could take something “innocent” and I would quietly snicker and share a laugh over it with Paul. This morning as we entered the hospital, we saw our favorite security guard, who didn’t even care where we were going and happily gave us a visitor’s pass. He is so nice to us. We get to the “check in” where they put a bracelet on Ethan and send him to the lab. While we were waiting, there was a cartoon on with dogs in it.  The kid dogs say “let’s play tickle crabs” the kid dogs were all excited to play along with the dad dog. The kid dogs proceeded to tickle the dad and crawl all on top of them. The dad dog was saying “if only I had someone to love to get rid of these tickle crabs” and “I went to the beach an caught tickle crabs”. Who is writing this???????? I asked Ethan if he had tickle crabs. We both were quietly snickering as there was a small child in the room.  I texted Paul and Avery to let the

We had another day of rest. We watched tv and cleaned. Ethan worked on schoolwork and is bummed he has so much more to do. Ethan is really struggling with the fact that the last two years have set him back so far. He has had to be mostly quarantined for the past two years. He is feeling ripped off that he has had so many medical issues. “What is the bright side?” I asked.  He didn’t want to play that game and wallowing was what he wanted to do. I pointed out that we have 3 weeks left. Then his training wheels are off and he can hit the ground running. “Kick hell in the balls”. I pointed out the goals he has set for himself. Wanting to finish his car project, work and take classes. He didn’t really want to hear it. That’s ok, sometimes we all need a good pity party. He deserves that. These last 3 weeks will be a struggle for him. I can see the big picture.  We also saw some more Christmas lights. I enjoy that.

Today was undoubtedly a better than Christmas last year. Ethan was bummed today. He saw all the people having a great Christmas on social media and it made him feel trapped and bummed about being here.  I get it. Life over the past 2 years has been anything than normal. Ethan loves the holidays and traditions. So it has been a big let down for him. It was pretty much just a Saturday for us. He just wants to go home and start his life as a healthy kid. The bright side of being in NYC is that it limits our exposure to people and covid is going nuts. Ethan is immunosuppressed and covid could really cause a life threatening issue for him. So limiting our exposure has been a good thing. I am hoping that his mood lightens when Paul and Avery arrive and we can have our family Christmas. Ethan and I watched true crime stories. We watched the Ted Bundy story and the Night stalker story. We ended the night with a light tv show, the “Press Your Luck” game show. “Big money, big money, no whammy’s,

Today was much better, stomach wise, than yesterday. Ethan and I went to the store and I bought some things to make dinner tomorrow night for us. There was so much poop on the side walk. I am hoping it was dog poop, but one never knows. We came back and we cleaned a little bit. Ethan is still working on his college work. He has until the 15 th to turn in all his missed work. Christmas Eve is supposed to be a time to be with family. Even though we are hundreds of miles a way and it doesn’t really feel like Christmas, we are SO thankful to be as far along in recovery as we are. We won’t really “celebrate” Christmas until Paul and Avery come visit.   Tomorrow we will probably rest and watch tv. We will eat our special dinner and Ethan will do his schoolwork.  We will also reflect on how far Ethan has come. This Christmas we can converse. Last year I was begging just to hear Ethan’s voice one more time. I wasn’t sure if that was going to happen. This year we can talk about our donor family

Today wasn’t the best day. My stomach was off and I was really tired. I perfected resting today. I took a nap and felt a little better. I still get deep soreness on my left side where my kidney used to be. I doesn’t hurt, it’s more sore and annoying. I have a total of 4 incisions. They are healing well just occasionally sore. Ethan was feeling better today. He worked on some of his assignments for school. My appetite wasn’t so hot today but I forced myself to have a little nutrition. I am ready for a good nights sleep and hopefully feel better tomorrow.

 Today was all about the paperwork. I was able to submit claims to insurance, Ethan’s college, and more. I worked on things until about noon.  I then got my blood pumping and exercised my heart with a two mile walk. It was a little brisk, but the sun was out and I was comfortable. On my way back, I had a homeless man ask me my name and if I wanted to snuggle up to him and keep him warm. He was standing outside the church with the red door. I walk by this church often. It is tall, sturdy with beautiful windows. I paused, turned around and looked him in the eye. “No, I don’t.” I kept walking. I was annoyed. The rest of the day was low key and uneventful. One day closer to home.

We got a delightful holiday card complete with fun kidney puns. They never get old. This morning was spent on trying to set up my Medicaid travel for future appointments that Ethan and I will be traveling to. We have once a week appointments starting mid January and will be commuting from Rochester once a week.  To do this, I had to create a portal, then enter the dates, address and time of each individual trip. There is no option to have the trip take two days (as in our case, it will). So I had to schedule them all as one day trips. Because the online portal does not give you an option for overnight travel, I had to call and go through MANY prompts. I accidentally figured out how to talk to a live person as this was NEVER an option.  I asked how to schedule an over night trip (as outlined in their 19 pages travel document). It seems this is an impossible question for the many people I spoke with on the phone. I was “disconnected after being on hold for 20 minutes while the employee w

I was a bit disappointed with Airbnb (the company) today (not our hosts). The company charged the wrong card on file. The card I wanted charged, was set as the default card, as I understood “default” to be the card they would use. Boy did I misunderstand the meaning of that word. They charged an old card, and one I did NOT want used.  When I called the company to let them know of their error, they can’t reverse the charge and then charge the correct card. Why? Not sure because literally every other business can do this. It was frustrating and annoying because this wasn’t my fault. I even tried to speak with a manager, but apparently they don’t do that. I reached out to the hosts and I am hoping to go about it with a different, out side of the box approach. Moving along, Ethan made out well with his Dr. appointment today. He gets to discontinue his weekly injections for anemia and his daily injections for blood clots. This is superb news.  His rejection medication levels shot up high ag

 We had a pretty exciting day. We met up with a classmate of Ethan’s and her family today in Central Park. As we were waiting for them, Ethan and I walked around and really enjoyed the wild life. There were curious geese, that were walking right up to us. You could tell if they were behind you because their big webbed feet slapped against the pavement. Not graceful at all.  But the funniest was the tree of squirrels. There were so many. We kept throwing acorns to them. They would pick up the acorns as if they were diamonds we were throwing. Then they would slovenly run away with their well fed, pudgy bodies. We met up with Ethan’s friend and her family and had a delightful time walking around and looking at the beauty of nature in the city. I had never met them but it felt like I had known them for ages.  We walked by conservatory, through the park and to the water fall. It’s so weird to see this picturesque little waterfall in the middle of a big city.  You would never know it though,

Both Ethan and I slept in. We both must have needed it. The weather was a bit misty and wet out. We walked to the store to grab some snacks. It was a pretty low key day. Paul took Avery to go look at Christmas lights. Ethan and I were feeling a little left out because this is an annual family tradition. We decided to go for a walk around our city neighborhood. We saw many windows floors above the busy roads decked out with twinkling lights. One of the neighborhood parks was full of lights. It was a good walk and we both agreed we needed that to get in the Christmas spirit. Ethan was inspired to give our little, street side window a makeover. He quickly grabbed the Christmas lights we brought and got in the window. He was spreading his cheer to everyone who would accept it. It is nice we are able to embrace the holiday this year. 

I did another walk today. The weather is so nice. It clears my mind and I can pretend we aren’t in the middle of the city. Ethan doesn’t really want to do to much because  he is a home body. He also has been feeling tired because his rejection medication is not regulated. We are getting closer to having it within the normal range. Today is the one year anniversary of Ethan’s cardiac arrest. I place myself back in that moment and could never have predicted the whirl wind year that we have had. It’s crazy to think the a few moments could have dictated Ethans entire trajectory. He could have gone either way that day. We are so appreciative of his wonderful team. We stayed in the apartment mostly. It is a less chance of getting covid.  Ethan worked a bit on his school work. We were going to go to Central Park, but we made plans to meet up with a friend on Sunday for that.  Ethan took a nap this afternoon. He sleeps so soundly. We are doing what we are supposed to, rest, rest and more rest.

Ethan had another nephrology appointment today. That means he had to go to the lab and get his blood drawn as well as go see the doctor. There were residents there so they saw Ethan as well. One of the ladies remembers Ethan from 9 Tower last year. She was shocked to see how his face has changed (she asked him to lower his mask). No more 85# skeleton boy. Today he is weighing in at 119 #. We received the good news that he can discontinue his blood pressure medication as well as a stomach medication. 2 meds stripped away. Ya hoo! I have really been pushing to end the daily injections and switch Ethan over to an oral medication. He is feeling tortured. I met with the hematologist today to discuss the possibility of this. We are going to start the transition as soon as the pills are delivered tomorrow. Unfortunately, he has to continue with the injections for at least another week. Based on Ethan’s bloodwork, he is at risk for clots, so he will need to be on a protective dose of Coumadin

I went for a walk this morning. The sunshine warmed my skin, the temperature was pleasant. I left Ethan back at the apartment to do his college work that he is behind on. I did a mile loop that hugged Edgecomb park. It is a neat little park close by that features a playground, swimming pool, tennis and basketball courts and a green space for people to enjoy. I started getting warm and took my jacket off. I rounded the corner and locked eyes with an older man with an odd look on his face. I saw some movement out of the corner of my eye and looked down. There was a feeble baby rat, about the size of my hand, hobbling slowly coming towards me. NOPE! I immediately felt chunks rising in my esophagus. I pulled my mask off and bent over to brace myself with my hands on my thighs read to vomit. I HATE mice, rats and chipmunks. Just the wild ones. They are the ones that carry disease and will attack you, and eat your eyeballs. I know that doesn’t sound logical and I haven’t been able to shake t

Today we played a game called “Where’s Patti’s Paid Familt Leave?” I went into the game a loser because the company never received it. They asked me to fax over a copy of my Paid Family Leave paperwork and they would add me to their system. I just don’t like fax machines. Who has a fax machine? Is it 2005? Hasn’t the world of technology progressed enough for the fax machine to die off like the Telegraph? When I was packing for this trip I thought…am I going to need my fax machine? (Just kidding, I don’t have one). I had to restart at the beginning and create a claim, even though this was submitted a month ago. Grr! The lady was super helpful and I appreciated her.  I needed to clear my head and Ethan seemed like he needed a pick me up. We decided to get some sunshine therapy. We walked to convent Street and stayed on that street for a bit, because we were directly in the sunshine. I kept asking Ethan if he wanted to turn around.  We kept blazing forward. We walked down and saw the Hami

Ethan and I made our way this morning to the hospital for Ethan’s twice a week labwork and appointment. Ethan has a goal to have his rejection medication to be measured between 8-10. He has been boomeranging his levels as his dose is closely titrated. It was last measured on Friday at 14. His dose of medication was lowered. Today he measured high again. His level was 19. Yikes! His dose was cut in half. This is the tricky part of after transplant. Regulating the medications. Ethan and I both felt tired today. We did stay up late to watch a show on metal fabrication and welding. He took a nap. I proceeded to try and figure out how we are going to pull off this intensive post transplant schedule. I also contacted our coordinator regarding several letters and forms I need filled out for college, insurance, and SSI. I also had several emails to respond to, that were more difficult to look at when sitting in a chair was a little more painful. My gut seems to be getting better each day. I dr

I am now to the point with my stomach that I am not sure if I am starving or nauseous. I am eating small amounts frequently to nurse this wounded gut back to health. I am eating elegant foods such as apple sauce, saltines and banana. I am feeling a little more energetic. Ethan and I cleaned today. We also walked to the pharmacy which is approximately 0.2 miles away. The sunshine therapy was good for us both. The length of the walk seems short but it was hilly. We were both a little out of breath.  The crazy people were out. One lady was pushing her grocery cart in the middle of the street yelling things out. We stayed away from her.   It was neat that everyone was out walking their dogs. Just seeing the dogs makes me happy. They bring their dogs everywhere, even in the stores. The dogs are used to it and behave. They are indifferent to what is going on around them. If I took my dogs somewhere, they would likely embarrass me by peeing on stuff or sniffing someone’s butt. (Poor Penny wou

Today my guts were slightly less pissed off than yesterday. Progress.  I had to go to the store this morning. It’s a short walk. Since I am in a place that no one knows me, I went to the store without a shower, looking a little homeless. Not my style but wasn’t feeling great. I get in the store and the inevitable happens. There I was, looking like something the cat dragged in and I hear my name “Patti?” “Yes?” I spun around and only saw pretty brown eyes staring back at me. This woman had her hood up and a mask on. I was at a loss as to whom it could be. I felt embarrassed that I didn’t exactly know who it was. Turns out it was our social worker from the hospital from a year ago and she lives in our neighborhood. Such a small world. She had nothing but kind things to say and was asking about Ethan. It was a comforting experience of familiarity. Ethan and I laid low and watched Netflix all day. Truly took it easy. The people living upstairs had a loud party tonight. I have another heada

There are only a few people I care to discuss the intimate details of my bowels with. Everyone else, I would prefer, to think I just don’t poop at all.  The last 3 or so days, however, have seemed like I have been on a continuous loop of colonoscopy prep. It has turned into a game of “Am I going to” : burp, vomit, pass gas or have diarrhea. It’s not really a fun game and I don’t recommend it. It makes me feel gross. Today was the worst. Thank goodness my appointment wasn’t until later. When I arrived I met with the surgeon and told him about my guy issues. He asked me a series of questions, including “how many times have you had diarrhea today?” My answer: “about 15.” He asked how my appetite was….terrible. I am doing my best to choke down protein rich, bland foods. I have to mentally prepare to eat because of how bad it makes me feel afterward. I eat, then lay down with an ice pack.  He told me to go to the lab and they would “run a few tests” to make sure I didn’t have a bacterial is

  Today Ethan and I were both sore and feeling blah. We laid low. He had his first of many check ups and blood work at the hospital.  The security guy recognized me but had never actually seen Ethan. It was fun to watch that and the pure joy on this man’s face after dealing with the last name of Diiulio for months on end. He was one of the security guards I liked. Ethan’s appointment went well. His rejection medication is being tweaked. He had his several tubes of blood drawn and took his pills in the office. Two of his medications are injections that I have to give him. One is daily, one is weekly. These will be discontinued at some point along with some of his other medications. Sometimes it can take up to a year though. We walked to the grocery store  and grabbed lunch and watched tv this afternoon. I called social security to inform them Ethan has had his transplant (per their request in the paperwork) I was on hold for 30 minutes and then a recording came on saying no one was avai

Today was emotional for me. Not bad emotional, good emotional. I am in a state of shock and disbelief. I finally was able to process what has happened over this past week.  We woke up this morning, no making a dialysis plan for the day. No trying to figure where to carve the hours for dialysis, no trying to condense life to make sure just the most important necessities were met. We had NOTHING on our schedule.  Ethan took his first real shower in over a year. It is such a simple thing. A thing we all do. As the water washed over him, my emotions were flowing all over me.He can do it by himself with no danger of harming himself from infection of the dialysis catheter. Just like that, another chain to hell is broken. Ha! Take that hell! 💪🏻So overwhelmingly unbelievable.  We had a low- key day as Brian and Kristen busted their ass cleaning, washing all the bedding and towels, stocking the fridge before they departed. How do you thank someone for uprooting their life to help you with you

 Today was a slow day. Everything just takes so LONG at the hospital. I spoke to the doctor this morning. She said discharge will be tomorrow or Thursday. WHAT? WHY? I stressed that today was what we were hoping for and tried to work out every type of scenario on how to change that projection, to today. Why? What are you keeping him for? Lab work? This is why we moved here….to be 5 minutes away and get lab work whenever it is requested. We went down the gambit of reasons and potential solutions. We were told to “wait and see”. Noon came and went without an answer. Kristen and I were at the hospital at this point and Brian was at the apartment working. Only 2 people allowed in the room. We were visited by a friend on 9Tower which was amazing.  Each hour dragged on and on. Then we checked all the boxes. Our nurse said the orders were in but stalled. After my meeting with the pharmacist I was like…” Let’s get this show on the road.” We became the squeaky wheel. Within an hour we were out