Ethan’s Journey

I started my day off early. I was walking into work and it was still a little bit dark out. I had not had ANY coffee.  My brain was thinking of  several different things and I was entering the building. The beeping of the security system greeted me and I punched in the security code.  I punched the code in like it was our garage door and not the business. The alarm then detected it was wrong and escalated it’s alarm sound to panic beeping. I started panic pushing buttons because it was before 6:00 am and I didn’t want the alarm to go off. So then the alarm went off. You would have thought we were in for a nuclear attack with the hideous, repetitive, pain inducing squeal of the alarm.  I felt hot. I immediately started sweating.  I panic buttoned pushed to correctly type in the code….multiple times. Oh geez the poor neighbors. Finally the alarm stopped, along with my potty mouth. Phew! We had Ethan’s hematology visit today. It took about 45 minutes to go over wha...

These work days with dialysis are long and tiring. But I am glad they are balanced with good days mixed in. Ethan didn’t complain of any soreness today. He was on his feet a bit yesterday. He also had a very busy day yesterday, so this is ideal. Yeah! Tomorrow we go to the hematologist to see what they say about Ethan’s lack of platelets. I am looking forward to it. It should be interesting but also it will be nice to find out what we can do to get those numbers up.  Ethan is feeling better and eating better. His weight has gone up a little bit and we hope to keep up that momentum. Ethan still struggles with his sore tongue where he bit it during his seizure.

Today is my birthday. For my birthday, i took Ethan to get lab work done. This doesn’t sound overly exciting but we had the best conversation in the car about how even though he has suffered a lot in this past several months, the bright spot is that we both have a profound understanding of living life to its fullest and just dealing with whatever situation arises and moving on.  I got to take Ethan to visit his friends at The Little Speed Shop. It was quite a gift for me that he felt well enough to go. He spent a few hours there. He was quite tired but he was excited he pulled it off. We will see how he feels tomorrow. I really was so thankful for the day I had. I got to spend time with each kid, as well as my nephew, and I saw my brother, his wife and my mom and Gene had us over for pizza and cake. I smiled and laughed a lot. It was fun. After dinner we arrived home and Paul and I sat on one of our swinging benches swearing at the loud traffic that went by (like a couple of old pe...

I had a busy morning tracking down Columbia invoices, calling to try to resolve those, calling in medication refills to a couple different pharmacies and collecting all the paperwork I need to submit for Medicaid. They pretty much want a DNA sample. I need to make lots of copies of documents including the last 3 months of medical invoices. I will be sending them a phone book of invoices. Yikes. I took Avery to get her work permit because she wants to start making some cash to put towards a car for herself. She is excited to pay taxes. (Not really). Today Ethan got to visit with his cousin, Jason, whom he hadn’t seen since before the pandemic. It was good to see him. Ethan said that yesterday and today were the first time he has felt a little more energetic in weeks. This is quite exciting. He is going to visit his friends at the Little Speed Shop soon, hopefully. I love to hear that. 

 Ethan tinkered with his remote controlled car today. I was very pleased because he hasn’t really had the umph to do much of anything. I was just glad he was doing something he enjoyed. He is still quite tired from his anemia and covid vaccine. We go to the hematologist in a few days for more insight. His eyes were bright today. He found his joy and that made me happy. Now he needs to start eating more calories.

Today was a dialysis day. Ethan hasn’t had dialysis since Thursday. He hasn’t gained any weight since Thursday. That means no weight (which isn’t ideal) but also no water weight (which is good). He is peeing a lot more now. About 600 ml per day. His kidney is not cleaning his blood or telling his bone marrow to make more red blood cells. His kidney is like an unemployed 30 year old living in Mom’s basement playing video games (useless). I was able to submit the final paperwork for one of Ethan’s scholarships. Cross another thing off my list. My back is still pretty sore but I have done LOTS of stretching and no ibuprofen. I started some of my old physical therapy exercises to help. We will see how it feels tomorrow. Motion is lotion. Ethan had a fun weekend and I am happy for that. I am hoping he feels a little more peppy soon. He had another iron infusion today. I am hopeful.

The weather was beautiful and we were able to enjoy it to the fullest. Ethan had a graduation party that he went to. He went with his friend and then had a couple friends over to the house afterward. Ethan felt pretty decent today, which is good. It is probably because he got so much sleep on Thursday night. The covid vaccine is settling down in his system. All good things. Avery went tubing with some friends and she had a blast on the lake. She fell off the tube a couple times but they had so much fun. She ended her tube ride by falling off and slicing her toe. We patched her back up but she was done riding at that point. Days like these are the rewards. Today I felt like I received a great award. Both my kids had fun and it felt like we were back to “normal”.  I also don’t want to forget to mention that Paul was full of it this weekend and constantly made me laugh. He is hilarious.

Today I dealt with three different people calling from the insurance company as well as the hospital calling for billing. The insurance company now realizes the billing issue and needs to figure out what charges need to be re-evaluated. However, the amount the hospital says we owe doesn’t jive up with the amount that was billed to the insurance company. I do have some people helping dive into this horrific mess. So it is mostly taken off my plate. I disengaged from the worry a while ago. But it was still an annoyance and time suck. We are making process so that is good. Today I got a decent dose of sunshine therapy. That was nice. Ethan slept until almost 11:00 today. He was feeling less tired but is having a pain in his left leg. He is going to work on stretching it over the next few days to see if it resolves. He slept longer than normal so I suspect it has to do with him laying in one position too long. Ethan is focused on taking in the calories. I didn’t focus on it….it came natura...

Some days I feel like Gumby. I have many people standing around me and pulling on all of my appendages as hard as they can, requesting this or that from me. I know it is par for the course. I am in survival mode. I have few goals for the day. Eat right, get some exercise, get sleep and take vitamins. There are some days that the Gumby limb tugging feels worse than others. I do find it difficult to motivate to resolve “billing” issues or insurance issues. Paperwork is as much fun as a tetanus shot in the eyeball would be. But I get it done, reluctantly, but done nonetheless. I look over at this kid and know that I am giving it my all and am not about to stop. He is my main priority.  This fatigue is hard to watch. I know some of it is vaccine related. The other part is iron related/anemia. I really hope these iron infusions can pull him out of this Funk. We disconnected from dialysis and immediately had to get ready for Ethan’s cardiology appointment. He crabbed about having to go. ...

🏎 Avery got her paper permit today! We had to head over to the DMV in Henrietta. Yeah Avery! There were no jerks today.  Avery knows the rules and now she needs to learn the muscle memory. We took a drive around the block together. She has many “opportunities for improvement”.  She will get there. It’s so cool to watch the kids grow. I mean I hate that they are getting older but it’s cool to watch the fruit of all our labor to flourish.  We came home from the DMV, and had a dialysis session. We had 30 minutes to spare before Ethan and I had to drive across town to his nephrology appointment. I hopped on the lawn mower and zipped around until I was signaled it was time to leave. Ethan and I arrived without a minute to spare. We met with the nephrologist (and of course our BFF dialysis nurse) and discussed Ethan’s frustration with his enormous lack of energy. Much effort is put into daily tasks like brushing his teeth and eating. It leaves little for anything else. He has ...

The stupid dialysis machine went off the entire night. I ended up calling the troubleshooting hotline at 4:30 am just to get it to stoop beeping. My first technique was to ignore it and just listen to it until I was ready to deal with it. I turned our fan on because it seemed like a good ideas.Today was a work day. No poop raining from the sky today. Luckily that doesn’t happen very often. Ethan was wiped out from his covid vaccine. I got home for lunch. I ate quickly so I could at least get some dishes and laundry done. As I was eating I looked at Ethan.  He mumbled that he was extremely tired. I encouraged him to take a nap and drink some water to stay hydrated. I can take the water off later. He actually went upstairs and went to bed. I got home a bit after 5:00. Ethan was no where around. I peeked all around the house and found him asleep in his bed, since I left him there several hours ago. He must have been tired. He got up and was able to do a couple things. But he was total...

I forgot to mention yesterday that Ethan got his 1st covid injection. He was nervous and scared. I was nervous and scared. The injection itself wasn’t bad. By this morning, Ethan’s arm was quite sore. I told him to continue taking  Tylenol extra strength. It is feeling much better today as the day went on and the drugs kicked in. He couldn’t have the covid vaccine for 6 months because his immune system is so low. It is slowly making a little bit of a comeback but will never be what it once was. First thing this morning i had a doctors appointment for myself. Once I was finished, I drove to work for a bit. At one point I was helping to draw blood and a dog have explosive mushy diarrhea ALL over my shirt. Like the entire front of it. When I removed it I had to try and not get mushy diarrhea on my face or in my hair. Ewwwww! There was poop raining from the sky. I had to reschedule Ethan’s SSI meeting. After being on hold for 29 minutes, we rescheduled it. 29 minutes for a 30 second ph...

 We had a really fun weekend with our friends camping out in their yard. There were several of us camping families that got together. Our kids are growing up and each one, is a good kid and pleasure to be around. Our friends have been to hell and back with us supporting our family for the last year and some change.they were our safety net, along with our family.  It was so nice to just kick back and laugh. Smiling and laughing can make any situation better. It was pouring rain yesterday, lots of mud and we still laughed A LOT!  Today we stayed for a bit but had to come home, back to reality. Continue with filling out paperwork, go over the plan of attack for the week so that everyone knows what day has what going on. I gave Ethan a dialysis treatment. He had his first of several iron infusions at the proper strength. I hope it kicks in soon. Tomorrow there are two appointment Kent’s that we have. Neither one is for Ethan.  Paul continues to have poison ivy itching is...

Sometimes you have to go through bad weather to get to the sunshine. Received the notice today that Ethan won another scholarship that will almost cover his entire first semester of school. Wow! So cool! This morning I finished filling out Ethan’s Medicaid application. I will try to submit it in the next few days. It is a lot of work to get things ready to submit. Copies of bank statements, bills from the hospital, birth certificate, driver’s  license. Yikes. I practically need a sperm sample for a DNA test. We had the opportunity to hang out with friends all day long. There were many laughs shared and it was great. It rained, well poured, the entire day. Paul eventually broke out the easy up and a pick up game of hackney sack started.  The food was bountiful and friendship gleamed. It was such a nice way to spend the day despite the terrible weather.  Ethan also had fun which was great to watch as this is the 7 month anniversary of Ethan’s cardiac arrest. It was nice to ...

 Blasted anemia! Got the word that Ethan’s iron levels are not good….this contributes to him feeling tired all the time. So we have a plan in place to boost those levels! More iron infusions. I’m sure we can raise these levels and Ethan will be able to do more. We have a little over a month to get him functioning for college. We had an appointment with the urologist today. We can check that off of our transplant prerequisite box.  We have to have so many people sign off on Ethan and sign off on myself as well. Ethan is not looking forward to his transplant. He is certain things will go wrong. I keep telling him no matter what happens there the actions that will occur and the reactions to deal with them. I can understand his fear. We talked about how we can’t control the outcome of the surgery. What ever happens, is going to happen. Moves and countermoves. It will be a chess game. Hopefully his body will behave. If it doesn’t his team will step in and help him just like they di...

 Ethan had to be taken to the eye doctor today. This was a routine check up to see how his keratopathies in his eyes, (as a result of not blinking while in his induced coma). Fun fact, the doctor found that the one of the contacts we put in on Tuesday wasn’t in his eye anymore. This was quite exciting because Ethan didn’t have any irritation and had no idea. This means progress. It is nice to see progress. Paul and Avery went to the BIG Hilton Parade tonight. Yesterday, Ethan got a phone call from the mayor of Hilton asking Ethan to ride in the car with the Mayor IN the parade. Unfortunately we had to do dialysis this afternoon/evening so he couldn’t it. His day was brightened by that phone call. It made him smile and feel special. It worked out for the best since Ethan isn’t vaccinated for COVID yet. Soon though. Very soon. We hopped onto the dialysis machine and did some blood cleaning. I got an alarm almost immediately. I said a not so nice word in my head. My dialysis nurse wou...

Today was an official “day off”. I don’t really have a “day off” anymore. We had to get lab work, go to the bank and get gas. We arrived home and I printed out my documents for the DMV for my appointment. Then I worked on uploading documents to a scholarship portal for another scholarship that Ethan won. Woo hoo! I hopped on my virtual donor appointment with my kidney donor coordinator. I learned that I will be in the hospital for about 2 -4 days. The first 7 days I have to really rest and stay off my feet. It will take about 4-6 weeks to heal from my surgical site and about 3 months for my remaining kidney to catch up. This means decent fatigue for about 3 months. This is because I will go from 100% kidney function to 50% function of my kidney’s cleaning ability until it starts picking up the slack from the missing kidney. I also learned that there is a $50,000 fine if I sell my kidney on the black market. Seems like if I wanted to sell my kidney I shouldn’t be fined…..but whatever....

Coolest dialysis patient ever! Actually his eyes are bugging him again. We go to the eye doctor on Thursday. Thankfully with some super power help, I was able to connect with a social worker that was able to coach me on the best way to coordinate Medicaid and Medicare without having me call each on over and over and get ping ponged back and forth between them. Thank goodness for this ground angel. I was told that due we should be applying for Medicaid first and not Medicare. This lovely woman emailed me the documents I needed. Finally…someone that can email. I was able to print off ALL the documents. There was quite a volume of ink used.  He instantly qualifies because of his critical illness of end stage renal failure. As I looked at my stack of paperwork, I felt like I just didn’t want to do it and MADE myself sit though this mountain of uncharted territories. I made sure to sit outside to do it. There has to be something in it for me. I brought the dogs out and sat near the pond...

Today was a big day in the Diiulio house. Avery took her permit test online. It was a bit of a shit show as the two little dogs decided to fake fight on top of Avery while she was taking her test. The fake fight turned real after one played a little too rough. We were laughing at the situation while Avery “just kept swimming” through her test and worked her way to a 100%. Nice job kid! The dialysis machine was close to being run over with my van….multiple times “accidentally”. Last night I tried to make a new batch of  dialysate (solution that cleans Ethan’s blood). It takes 7 hours until it’s ready. Those are not 7 of my hours, the machine does all the work. Around  midnight I woke up to the machine alarming. Really? For some reason I carefully tip toed through Ethan’s room so I wouldn’t wake him up even though his machine was making an ear piercing steady and screaming alarm. I did some trouble shooting and cleared the alarm. I laid back down….the machine screamed “NOPE!” I ...

Sundays seem to be so short. Do they have less hours in them compared to the other days of the week? It seems like it. Today was full of dialysis and cooking for meals for during the week. After spending a full day, I opened a bottle of Aldi wine (friend got it for me on her trip) and sat on the massage chair (thanks Carrie). My back really is pissed at me. So I did some physical therapy exercises and stretched. I also took some ibuprofen. It was screaming non audible pains from hell down my leg and radiating fire. I have disc issues so this is no stranger to me. Today while doing Ethan’s dialysis treatment, he was so thrilled that one of his nocturnal fish was playfully swimming with his other fish. This thing was showing off. Doing acrobatics in the water, zooming this way and that way. His smile was my bright spot. As hard as this new life can be, his smile is why we are here.

I worked today. I do love vacation, but if I was on vacation all the time, I wouldn’t find it as joyful. Who am I kidding…yes I would ha ha. I got a call from the doctor’s office stating that one of the medications Ethan needed a refill on, would require an exam prior to refill. I have about 7 days worth of medication left. The lady’s voice was very nasally and snotty and most certainly unlikable. (Actually it wasn’t at all, she was very kind with a normal and pleasant voice, but I wanted to not like her so in my recollection I decided to have her sound nasally and snotty….don’t judge…. it’s a coping skill.) “We can’t refill the medication without an exam. How many pills do you have left?” She asked “Ok….I have about 7 pills left. 7 days worth.” I said. “ ok….let me see when our next appointment is…..” as she is looking I am going over my work and other appointments that we have scheduled for the week, I was trying to figure out how to shimmy another appointment in this week. “Any chan...

We came home today. Boo! Gotta be a responsible adult and go to work. Being an adult sucks sometimes. I had kids and pets with me. Paul drove solo. All kids and pets slept in the car on the way home. The only drama was that Phineas sat on the rabbit and practically suffocated him. Other than that, no excitement, just the way I like it. Ethan was feeling especially tired. Anemia strikes again. He was going to go hang out with his friends but decided that he was feeling tired and knew that if he went, he would have paid for it tomorrow.  You can see Ferguson on Ethan’s lap. Phineas is in the other seat next to the backpack, snoring away. Avery had Penny on her lap, both sleeping the car ride away. We got home and did the unpacking frenzy. Laundry, get things situated for a busy week coming up. Set up the dialysis machine for treatment tomorrow. All of it boring and back to the grind. It was all worth the week we have been together.  Birthday shout out to my brother Brian. Happy ...

It was a rainy day today. Ethan slept in until well after 10:30 which is not like him. I woke him up so I could start dialysis.  Might as well do it while it’s raining out. When we were done, the rain had let up. I gave him an iron infusion today to hopefully keep his energy level up. The kids and I decided to go walking down at the isthmus. It’s a cool little beach that has beat rocks, sea glass treasures as well as a plethora of dead stuff and for whatever reason, tampon applicators that have washed up. I can never figure out how many women are inserting tampons at the lake that lose track of the applicators. This Little Rock excursion was the perfect disguise for Ethan’s physical therapy. He walked up and down big rocks, bent over to pick things up or examine them, walked on uneven ground…..it targeted every area of his body. The water was still and calm. Afterward, we watched some tv together and then went to dinner and spent the evening with some friends in Cape Vincent. The e...

We had a leisurely day today. It was a little chilly. I gave Ethan dialysis in the morning while there was a light sprinkle going on outside. My good friend from Middle and High school came to visit. It has been almost two years since we have seen each other. It was so nice to visit. She is the be of those people that you can pick up where you left off as if time hasn’t passed. A treasure in itself. I spoke to Ethan’s teacher at MCC and discussed when the best time would be for Ethan to get his transplant that would least impact his coursework. We are thinking in the spring. I broke the news to Ethan. He is convinced it will be a 5 month ordeal and is worried.  He is worried because we will be at different hospitals. He is worried that things will go awry (I wonder why?). He is worried that he is going to be without his team on 9 Tower. I told him that as soon as I can safely leave the hospital (it’s a block away) that I would come and stay with him. He then engaged his coping skil...

 Today was a non dialysis day. Free day. Ethan spent time outside walking on the little beach and finding cool looking rocks.  He decided to get some vitamin D and was walking around with his shirt off getting sun. We heavily slathered on the sun screen. His scars look pretty good. He of course still has his catheter in.  He doesn’t mind his scars. They tell a story about his critical illness. They are a badge of honor and he worked so hard to get them. The weather was nice. Warm but a little windy. Avery finished off the day with a lake bath and swim about 8:00 pm. Tomorrow we do dialysis again. Ethan drank a lot today so I hope he didn’t retain a bunch of fluid.

Today is Avery’s 16 th birthday. Happy Birthday my baby girl. She has grown into such a delightful kid. She has been thrown into a tailspin over the past year and has handled it like a champ. We went to the bakery this morning for some fresh made donuts. She wanted to out to dinner at the Irish pub, so we are going to do that.  Ethan slept until 10:30 am. This pushed off dialysis until the middle of the day. Avery wanted to walk on the flat rock in the lake. I told her I wasn’t sure if we were going to get to that because dialysis was going to take several hours and then we were going out to eat. We may table it until tomorrow. Ethan knew he was going to be exhausted today. He napped during dialysis. I was glad for that. He was saving his energy for going out to dinner. We went to Texas Roadhouse for Avery’s birthday dinner. This was because the Irish pub was closed. Avery loved it. Ethan ordered an entire rack of ribs. He ate some ribs at the restaurant. He then brought the leftov...

  Happy Fourth of July.  Today we visited with friends and family. Ethan planned a huge spectacular fireworks show. He has been collecting fire works and researching fuses and how to make a great show. As our friends and family looked on as well as many families along the shoreline, we had a spectacular show. It was beautifully orchestrated. My uncle took some of us out on the boat to watch. As each work of art shot up into the sky, it painted a brief, unique picture of its energy. An energy contagious from Ethan. When it was over, Ethan was all smiles. He said “that is how you kick ass!”. Boy was he right! At the end of the evening I found myself appreciating the darkness with the dancing, twinkling stars above me in the sky. How beautiful. It was definitely a triumphant Fourth of July!

  We did our first camping dialysis treatment today. It was successful. When the kids were born we made a conscious decision to not base our lives around them, to incorporate them into ours. Same applies with dialysis. We will make it work with our lifestyle….take that hell! You aren’t going to ruin our fun! The weather was beautiful. The sun was out, there was a breeze, it smelled like fresh cut grass and the temperature was just right. Let’s not forget the dogs were enjoying themselves which just makes me happy. Avery and I took the dogs for a walk and found some cows in a pasture nearby. Wow! Their beautiful eyes and eye lashes. The rumble of their moo’s made us giggle. The cows were very curious and kept licking our hands. They were fun to watch. We made Ethan walk to go see them too. It was physical therapy as well as soul lifting. Ethan is planning a spectacular fireworks display for tomorrow. He bought a few sizes of fuse and is going to time a display. He is going to lay ev...

  We were finally able to get ourselves together and go camping. We packed up our dialysis machine, got our house sitter situated, and we’re able to go camping or clamping as I like to call it. We arrived on lake Ontario, near Three Mile Bay in the thousand islands. This is a trip that we look forward to every year, however, this year especially.  It is hard to think Ethan will not be able to swim or jet ski. His central line keeps him out of the shower, lake and any other way he could get himself wet. He is hoping to stay busy with his RC car, fireworks, paddle boat, walking, and more besides swimming.  We also brought a lot of DVD’s we picked up at Goodwill or Salvation Army. We had a nice evening around the fire even though it rained off and on. Somehow I had 4 umbrellas in our camper to share. We were sitting around the campfire with silly umbrellas, laughing at life. Enjoying the company. Enjoying the moment. The other day, Avery made fun of me because I bought plast...

Iron infusion Today was a much better day. Maybe I was distracted by animals at work. Maybe it was because I got my feelings out yesterday and was ready to move forward today. Maybe it was because it wasn’t so blasted hot and I didn’t feel like I was choking from the heat.  I had to leave work early. I had the excitement of going to the OBGYN for an annual exam as well as check that box off my kidney transplant donor evaluation. I ran into a friend there and chatted for a few minutes. My favorite question was when I was asked if I wanted to be tested for STD’s. The only way I could have an STD is if I had an affair. In the past year….it was absurd to even think about having the time to participate in one more thing. Especially an affair. Ha! I laughed at the lady, declined and shuddered at the thought of spending time on an affair. Avery went to the doctor for a hip issue. She has scoliosis and it is likely catching up to her. She has to go get xrays. Ethan finished with his PT and...