Ethan’s Journey

I woke up today. I woke up early on my “day off” which I say in jest. I laid in bed, under caffeinated. It was still dark but I stared at the ceiling fan going around and around and around. My mind was blank yet full. What the hell is that noise? I wondered. A continuous series of three beeps, then a pause, then three beeps. It was faint to the point I even questioned if I was actually hearing it or not. I cleared my mind with a phone game. I like to play games on my phone because I have to use all my brain power to focus and I can’t think of anything else. Some people do heroine, I play games on my phone and drink coffee. We all have addictions. The noise I later discovered, was Ethan’s dialysis machine and had been doing this series of beeps all night long. Ethan slept through it. Wow! Paul woke up and asked me what I was doing today. With a heavy sigh, I told him. I was overwhelmed and listed off a list that wouldn’t stop. I had verbal diarrhea all over Paul. It was practically drip...

Warning: my mind is running amok. I am a little cranky. Probably not a great combination. I always here the phrase “it takes a village to raise a child.” I think the saying should be changed to “it takes a village to get your kid’s parents through a heart transplant and the aftermath”. Applying for SSI, applying for Medicare (or at least trying), applying for Medicaid (or at least trying) just to help your child financially get through this disaster….it’s not for sissies. I am giving my patience a workout. Calling the collection agency we have been sent to inappropriately because insurance says the hospital screwed up the billing and coding, while the hospital is saying the insurance isn’t going to cover this and that….the collections agency not listening and repeatedly asking if I want to pay by credit card or check, on a balance I am pretty certain is inaccurate. All while trying to pull off a full time job while doing dialysis four times a week. Ugh!  Did I mention Ethan has app...

Today I had one of those days that moms have now and again wishing I had more time with the kids. I feel exhausted all the time and when I get home, even though they have helped around the house, there is always more to do. I know I am not the only one that feels this way. This week is busy for us. We have several appointments. Tomorrow is neurology. It should be an interesting appointment because we have noticed over the past several months that Ethan does these odd, rhythmic patterns with his right leg. His stroke was on the right side, so it shouldn’t be from that theoretically. Then there are three appointments on Wednesday plus many errands, another appointment Thursday….then we will have a break. Phew! Ethan is still in awe of what he has been through. He openly chats with people about it. I think it helps him work through it. He asks a lot of questions and wants to make more videos. Anemia is kicking his butt a little bit. He gets tired easily. Today he was napping while I came ...

Today was one thing after another. Not a hard day but a busy day. No time to rest. It didn’t help that I somehow missed making another batch of dialysate. Oops. Had to haul five, 5 liter bags upstairs and start over because of the mistake. Not a big deal but time consuming. I would like to say live and learn, but it seems the learning part I am a bit slow on the uptake. Ethan was tired today. He took a brief nap this afternoon and went to bed early. All of his fun last night was catching up to him. We got to meet Ethan’s Make a Wish grantee today face time face which was a first. Covid has slowed the Make a Wish process way down. It was really nice to have a personal visit. My leg has healed really well. It doesn’t hurt anymore and is not swollen. Woo hoo!

Hot! It was really hot today. Today was a fun day. Ethan had organized a car meet at our house. We had an influx of people come and go. Ethan was thrilled. My brother and his wife visited and it was nice to see them. Today felt like a sliver of normal. No dialysis. Being able to relax for a moment. Visiting with friends and family. For a moment, we forgot all about the medical crap and Ethan was able to be a normal 18 year old. It was a gift for the entire family. We all had fun watching people peel out of the driveway. We had one car do a massively impressive burnout in the driveway leaving bragworthy skid marks down our driveway. We all loved it. This afternoon and evening were my bright spot.

 When did life get so tiring? I feel tired. Today we did dialysis mid afternoon. During dialysis I tried, once again, to call Medicare. Then they rendered me to Medicaid. Called Medicaid because Medicare won’t help.  I can’t apply Ethan for Medicaid because he needs to be on SSDI which he doesn’t qualify for. So now what? I was referred to NY State of Health Commerce and They set me up with an account (that I didn’t need) online but when I asked after 45 minutes of how this would get me closer to figuring Ethan’s dilemma out, He told me he wasn’t licensed in helping with Medicaid or Medicare therefore he could not advise me on what to do. Thanks Pal.  I consider myself to have average intelligence and am frustrated at this entire process. So in total I was on the phone almost 2 hours and have nothing to show for it except deeper WTF creases in my forehead. I am now going to engage my social worker and see if any progress can be made. Ethan cleaned the engine of his car to...

I got a phone call today at lunch from the endocrinologist from NYC. Ethan had some follow up tests last week to make sure the tumor on his pituitary gland isn’t misbehaving.  In fact, the tumor has settled down and many of the values that were elevated in the past are now approaching or are in the normal range. Most of these tumors are benign but can cause issues with vision impairment, headaches, loss of pituitary function or excessive hormone production that has its list of a bazillion (yeah….that’s a real number) medical issues. This tumor caused Ethan’s hormones to be all out of whack (I am certain that is a medical term) earlier in the year. This is when he was diagnosed with hypothyroidism and has been on a supplement since. This was great news! I am so glad the levels are settling out. Sometimes when someone experiences such a significant critical illness these types of things happen. Ethan is perfectly imperfect. He’s Fl-awesome. Dialysis went well tonight. We started up t...

  As I reflect back on the past year, I am so proud to say the I have a graduate! Great job to Ethan and all his class mates. Hilton School District did a great job of with planning and executing such a wonderful graduation ceremony. I can’t say enough great things about how much they have bent over backwards for us. Wow! Frontier Field was a great venue. I had to go buy some chair pads for Ethan’s boney butt.  His counselor at school has been nothing but supportive and helpful for the past several years. She took care of making sure Ethan’s chair had the pads.  I dropped Ethan off with his classmates. These are kids he hasn’t seen since March 13 th, 2020.  Ethan walked by us as the seniors paraded down to the field and found their seats.  There were speeches made and then the kids lined up for the ceremonious roll call as they get their moment to have their name called. My brother, Brian and his wife, Kristen were watching the live stream.  As we were list...

 Dialysis ended last night at 11:30. I was feeling a bit tired today. I also have a swollen leg from a bee sting. So I probably have to go to the doctor tomorrow. It’s not just swollen a little. It is hot and sore, it is swollen from my knee to my ankle….it also spreading. So that is a fun little side gig I have going on. Probably just a little sepsis. Don’t worry. My blood pressure is fine and I am not confused. My temperature is normal so I think I will be ok for a few hours while I sleep. I may have to re-evaluate this dialysis schedule because it isn’t for sissies. I am pooped. I have to catch up tomorrow. I have the day off. It’s graduation day for Ethan.  The live stream to Ethan’s graduation is:  https://www.youtube.com/user/HiltonCSD The ceremony starts at 7:30. I am not even going to bother wearing makeup because I will likely cry. I balled like a baby at pre-k graduation. Mostly because we were told that there was a good chance he would be learning disabled afte...

 Ethan’s results came back ZERO rejection for his heart biopsy. Woo hoo! Even with all the ducking around of the insurance company. Today has been a long day. Ethan weighed in a bit fluid overloaded today. We may have to reevaluate our dialysis schedule if we can’t catch up with fluid removal.  I got the green light that all of my tests came back great and the next step for me is to meet with the surgeon. I am a match. We are coordinating our time in August and lining up our appointments. Ethan had a down day today. He is grieving his past life. We were told that he can finally be eligible to get the covid vaccine safely. I thought he would be more relieved to get it. It means he is healing and getting stronger. But he just saw it as another “poke” and he is tired of those. We will work on it. I miscalculated my sak tonight for dialysis. (That’s what she said). I thought I had more time to use it and did not. Since it takes about 7 hours to make, I had to do the treatment as i...

 Happy Father’s Day to all the amazing Dad’s out there. My dad is not with us in the physical sense, but I know he hangs around and watches over us. Occasionally he picks on Paul. We had a nice quiet Father’s Day morning. I made breakfast as we wished Paul a happy day.  Ethan had a decent day. He was tired this afternoon but nothing terrible. We visited with our family (bright spot) and we’re glad that we were all able to be together. These holidays are even more special this year.  I am nervous to see how my work schedule will work with this new dialysis life. Juggling it all seems daunting. But I am sure that it will work out the way it is supposed to. It’s all about balance.

 This morning started with Paul and Ethan going to Cars and Coffee at the Little Speed Shop! Avery and I went a little later with the sole purpose of meeting Jill and Kevin, the owners, in person. I was able to meet Jill. Jill and Kevin have been so kind to us and words will never express our appreciation accurately. Cars and Coffee is a great workout for Ethan. It has been a favorite event to attend for Ethan and Paul for many years. Ethan carried around his gimble and camera, he talked to people, he walks all around with his equipment. It is great for his muscle memory and endurance. I told Ethan that endurance should be a focus over the next few weeks. I have decided that I would like to try working a little more. Ethan is aware of his “tells” that a seizure will happen. He knows to alert us right away and lay on the floor. His seizures have been adequately controlled for over 6 weeks with medication. Ethan feels comfortable to stay home without me. Avery will mostly be home wit...

After my coffee this morning I noticed that Ethan had disappeared. I went looking for him and was delighted to see him in the garage working on car things. He was hammering something. There was a crowbar nearby. I told him “now this tells me you are feeling better”. He is eating now. A lot! He has more energy. This is great. It can be easy to get down. But he keeps plugging away. I spent the day making phone calls, sending emails and trying to cross things off my list.  I dealt with a few billing errors. Made some headway with scheduling appointments. And am preparing to totally dive into the world of college paperwork. I had a proud moment with Avery. She scored a 102 on her MCC AP Physics exam. She is going to go into her junior year with 8 college credits in Physics. Wow! Mid day we went to do a monthly check in with the nephrologist. We got to see our BFF dialysis nurse. We actually had fun at that appointment. We laughed and joked. Ethan negotiated that he didn’t want his inje...

We woke up this morning excited to meet up with one of our 9Tower friends for breakfast. We both were excited. We blindly chose this place just over the GW bridge that actually turned out to be a cute little place. We went to order and I pulled the biggest dumbass move. My wallet was in my backpack in my car in NJ. There is nothing like a “hey can you meet us for breakfast? Oh and pay for us too?” Mortifying! We will meet up again and make it right.  After we were mooches and ordered our food, we sat down.  “Oh my god, that’s what your face looks like.” Covid is so weird. I still don’t know what a lot of people’s faces look like from there. What a great morning. I probably could have chatted all day. But we had to say goodbye to our friend as Ethan’s boney butt was hurting him….AND we had a 6 hour trip ahead of us.  I programmed GPS but it wasn’t working with Bluetooth and just wasn’t talking. I was trying to talk Ethan through troubleshooting it and in the process made a...

Trying to get over the George Washington Bridge during rush hour traffic is a disaster. I can’t believe people do this daily. We honestly could walk faster.  Stop, roll three feet, stop….everyone driving around us making the same annoyed traffic face. Seeing people mouth the words “what the f@&k?” Over and over again. It really makes me appreciate my low traffic volume, 6 minute commute to work. Two stop lights. Very simple. With all the issues with Ethan’s rejection medication, I am a little nervous for today. Luckily these tests are done to find rejection before it really becomes a problem. We don’t really need another issue to tackle but if there is one, we can tackle it. We stopped at the heart center. They took vitals while the lady was printing out our lab orders. They parked us out in the waiting room. She was still trying to get things together and you could tell it wasn’t going well. Our angel cardiologist came out just to say “hi” and to see how our trip was so far. T...

We woke up this morning. I made a coffee in our room so that I could bless the world with my winning personality. Sorry world, today is not going to be your day. The cups are like the size of Dixie cups. Who do they think is staying here that would think this is an appropriate sized coffee? I looked at my little cup of coffee and decided to make every last drop count of this espresso sized cup.  It’s a cup of coffee for tinker bell. I will do my best to not be stupid but I am being set up for failure. I understand I may have an addiction. But at least it’s not heroine or meth. It took 20 minutes to do the 5 minute drive to the hospital. Luckily we had that factored in and arrived perfectly on time. Phew.  There wasn’t enough time to go find a coffee place and I am not supposed to eat or drink now until after my CT scan anyway. Ugh! Hungry and under caffeinated. I will have to do a lot of box breathing and cleansing breaths today I am sure. I sat silently pouting a little and f...

4:00 am.  The alarm went off. It’s dark out. I was sound asleep. I got up and woke Ethan up. He is not quite as fast as he used to be in the morning.  I let the dogs out. I even listened for coyote like I always do. All clear. Within a minute, I heard this terrible screeching noise and knew that one of the little dogs was being attacked by something. Omg! Then I heard Penny bark and knew it was Ferguson. I quickly put penny and Phineas in the house safe. I could hear the screeching and screaming tortured cries as I am running through our yard with socks on clapping and screaming into the dark to the back edge of the yard.  It didn’t sound like a coyote. The screaming screech was echoing off of all the trees and with the blackness of the night I needed a flashlight. I sprinted in my wet socks back to the house. I rounded the corner to the front of our house. Since when could I run this fast? And then, I saw his beautiful, precious old dog, grey face. Ferguson was sitting a...

 Today was my first solo dialysis treatment. I think I did pretty well. It was nice not to have to drive anywhere. It also reminds me that I can do anything I put my mind to.  We went to a family picnic today. The kids stayed home. Avery is a good protector of Ethan. She has a huge kind heart and is not afraid to let him know when he is out of line. I think I have all the dialysis equipment packed up. All my supplies are packed up. The dialysis center mailed the dialysate and normal saline right to our hotel. I had to have Paul pick the machine up for me. It was like #70. He almost blew out a testicle picking it up. I have already decided I will need help lifting it out the car and setting it up at the hotel. We will figure it out when we get there. We are packed and ready to go. Transplant evaluation…..take two.

Today I worked a good portion of the day. I was tired. My brain is tired. I started the 7 hour prep work for the home dialysis treatment. This means I got all the stuff ready and then pushed a button on our machine. The machine goes through a number of tests and some other stuff that I really don’t know….but it needs like 7 hours to mix before I can use it. My portion takes about 10 minutes or less. So it really wasn’t that big of a deal. I am feeling a bit blah today. Overwhelmed? Tired? I am not really sure. There is so much to do and I have the energy for none of it. I thought maybe if I took a walk outside and got some sunshine it may perk me up. It didn’t. I feel like I need a long nap. Ethan focused on his calorie intake today. His mouth still hurts but nothing a little mouth rinsing can’t fix. He is eating much better!  Now that his mouth is feeling a little better, we are going to really try to increase the PT we are doing at home. I want to pair it with activities I need h...

Home dialysis treatment number 2 has come and gone. Nailed it. I don’t mean to toot my own horn (who am I kidding….yes I do) but Toot Toot! This weekend if full of work and packing. Another trip to the lab that will cost the insurance company money because they haven’t approved his medication yet.  They are making their own hole on this one. Thank goodness for the lidocaine cream. At least it isn’t hurting Ethan as much with it. We leave early on Monday for NYC. Paul and Avery are staying home. Ethan and I have the evaluation and they are still only letting one parent in. We will be meeting with all sorts of different departments. Psychology, infectious diseases, finance department, kidney transplant team, Ethan is having an MRI, I have an EKG, CT scan, chest x-rays and more bloodwork. Ethan is also getting his heart biopsy. It will be a busy few days. Ethan’s mouth is feeling much better. He is eating up a storm. It is still sore but not nearly to the degree it was. I am hoping th...

Yesterday was a low day. Just frustrating at best. Today is a whole new day and I am feeling accomplished. I knew I could learn at home dialysis. I feel good about it. Of course I am going to push myself and try to do dialysis while we’re are in NYC. I see your at home dialysis….and raise you a traveling dialysis. I have practiced it two times….so I am practically an expert on it (not really). I am only a little nervous about it. But deep down I know I can do it. Ethan wrapped up his last day of high school and I am so proud. Wow kid! You did it. You kicked ass just like you said you would. I am taking bets on who thinks I might cry at his graduation. (Psst:  I am 110% I will be ugly crying) I think about my 24 year old self (stop doing the math, I am only 25 years old…at every birthday) with a brand new baby.  I had visions of his graduation day, after a great senior year full of homecoming, friends, drinking under the bleachers (who said that?) balancing a job, and just havi...

I didn’t sleep well last night. I felt out of sorts. I power cleaned at 4 in the morning just to be alone with my thoughts. Ethan needed his lab work this morning. His rejection medication levels were too low. Then they were too high. We had to go get poked to see if the changes we made yesterday will affect the level today. The frustrating part is there is a medication that we can get that keeps his level more stable but we are denied access to it. While waiting, we ran into a fellow NYC heart transplant warrior. We chatted while we waited. We were comparing stories. Both stories unbelievable in their own way. When we got home I called the insurance company. I was frustrated that there was a drug he could have that could keep things more stable but the company is preventing it. I needed an angle that we haven’t tried using before to help our case. I decided to use an angle that I have used many times while negotiating contracts with companies at work. Cost efficacy.  I spoke to so...

Today was better than yesterday. Ethan’s mouth was about the same but he pushed through it and was able to eat. We added calorie powder to his food to at least prevent more weight loss. Eating takes him an excessive amount of time. Usually his entire mouth hurts around the clock. We are hoping all the homeopathic remedies as well as the medicinal remedies start to offer relief ASAP! Ethan was struggling to get his school computer working. He needs to exchange it for a loaner for the next few days. We get that tomorrow. It is preventing him from doing his schoolwork. Ethan  gets weekly lab work done. The labs monitor his electrolytes, kidney values and tacro level. The tacro is the rejection medication. The tacro level measures how therapeutic the dose he is on is. His level should fall between 8-10.  He was sitting around 6  last week when the team was discussing the change in medication. Then the insurance company poo pooed that. The team had to get creative. They gave h...

Ethan woke up this morning, lip swollen, face long. He hurts. I know that look. He’s tough and keeps it together.  He likes to have me close to do his salt water rinse because it hurts him so bad he is afraid he will pass out from the pain. After his salt water rinse he sat down.  “I can see that you are frustrated.” I said.  I feel so helpless. There is nothing I can do to make the pain go away. With this simple phrase, he began talking. He talked about how frustrated he is. He talked about how a simple task like eating, is consuming his thoughts. He knows he has to, he wants to, but the thought of eating and drinking is just overwhelming. The two of us had a small cry together. We both talked about how this isn’t fair. He has been through enough. It is one thing after another. We then decided he was going to kick his hell in the balls again. I made him an omelet. It had some sausage, spinach and cheese in it. I added some powder to it to add calories and carbohydrates. ...

Today Ethan decided he wanted to dive in and start filming his interpretation of his journey. He wanted me part of it so that we could tell his story. I started sending him pictures and video from my phone as well as the video I took on his camera. He has a vision of what he wants his story to look like. He will start editing tomorrow. He is excited about sharing it. It is also therapeutic for him. This is offering him distraction from his 3 canker sores as well as his tongue that is still healing. He is struggling to take in calories because of the pain. He has the desire to eat but he feels like he is being stabbed in the mouth anytime he tries to eat. His weight has been dropping subtly. He tries so hard. Tonight he scrapped the bbq chicken he was excited to eat for a softer yogurt. I mixed in as much “duocal” as I could to beef up the amount of calories he was ingesting. His kidney diet has turned into an “eat whatever gets you calories without pain” diet. Despite this difficult fi...

I drove coffee free all the way to my appointment. With my large, 3 liters of urine hug in hand I waited about a half hour before my blood was drawn. Luckily I was so excited about the fact I drove right past a Tim Hortons within 2 minutes of the lab, I didn’t care. They took 68 ml’s of blood. Not a terribly large amount. But a decent blood draw. I don’t get stressed by needles, and have decent veins so I wasn’t even stressed about it. There was one test they couldn’t do because it was Saturday, so that was annoying. The air was warm and breezy today. It welcomed Ethan outside. He was going to take his shirt off and sit in the sun, but he didn’t want to burn his scar at all so he kept his shirt on. He still had some sun therapy for a little bit. I think it was good for him.  He had a relaxing evening playing his farm simulator game. Hopefully we have another beautiful day tomorrow. 

 I had my urine collection test. This means I collected all my urine for a 24 hour period, stored it in an orange jug in my refrigerator. That’s hot. I warned my family not to drink from the orange container. Best of all is packing the orange 3000 ml container (which is 3 Liters if you do the math) in a “discreet”  or actually not so discreet bag for dialysis.  I chose a pink bag because at least it looked girly. Excuse me while I try to fill my 3 liter jug, which is more than a 2 liter of Diet Pepsi, just for reference. My not so discreet bag was about the size of a large shopping bag. Dialysis went well. We shared laughs. I have decided that learning home dialysis has given us many gifts. It will give us the gift of freedom, as well as fostered a friendship. It was the gift of laughter. It was healing for Ethan and a safe means of expressing his feelings in a non judge-mental zone. I am so thankful for how things have fallen into place. Tomorrow I will drive the 40 some...

I was telling my BFF dialysis nurse about how I am competitive. I described about how quietly pissed I was  to hear that he had another lady learn how to do “at home” dialysis in 2 weeks. I was still a little miffed even after learning she was a dialysis nurse. It was an unfair advantage but still.  I was telling him about how when I was in the hospital giving birth to Ethan I wanted to know who else was in the hospital and how far along they were so I could have my baby before them.  I have accomplished my goal, which was to exceed the training timeline in 4 weeks instead of 6. Woo hoo! I can’t take all the credit. I had a damn good teacher. My biggest take home message is to work on reading the steps. I hate reading but it bites me in the ass every time I try to skip it. Ugh! Then I have to admit he is right and it’s a whole thing.  Ethan had a burst of energy today and was able to catch up on some things he has been looking forward to. He also ate decently today d...

Today Ethan’s mouth declared war on him. He has developed another canker sore. Magic mouthwash isn’t helping at all any more. I bought some topical canker sore cream with benzocaine. It was “too minty” for Ethan. He didn’t eat the best today but he tried. Time slips through my fingers like sand. I have been managing pretty good considering. I could do without all the graduation hoopla and college admissions hoopla on top of everything else. NYC decided Rochester wasn’t moving fast enough with scheduling the MRI. They went ahead and scheduled Ethan’s MRI when we go to the city. Our days will be full and tiring, but we are going to get it all done. Ethan is finishing up with his tutoring and has one to two more sessions for one of his classes. His other class wraps up next Friday. Phew! Once school is done we can spend more time focusing on healing and conditioning and moving forward. Ethan was my bright spot today. Despite his mouth hurting, he was able to get some school work done. He ...

I showed up to dialysis with my A game. I don’t like to brag.....wait...yes I do....I did really good. I read through the directions, followed it with minimal mistakes. Hell yeah!!!! Ethan felt a bit better today. His tongue was feeling a little better. His canker sore is the size of Texas. Ouch!  He lost weight over the weekend. He lost weight when he didn’t have dialysis. He should have gained water weight. But he lost weight. Which makes me a little sad. I also forgot to make his physical therapy appointments. When I called today, they couldn’t get Ethan in until next Thursday. So we are going to do our own PT and home for the next 8 days. Tonight we went down and worked with the weight bench did some stretching and a small amount of jogging. Even Avery came down and walked on the treadmill. I want to see this kid bulk up. We met up with endocrinology, via zoom. Ethan’s fatigue is likely not due to his thyroid medication. It is suspected that it may be from Ethan’s seizure medic...