Ethan’s Journey

 I woke up today and looked out at the lake. It was smooth. The sun was shining and I appreciated the gift from Mother Nature. Our first camping weekend after transplant was a success.  Paul survived another Memorial Day with potatoes in his wine. It’s an odd tradition. We started it several years ago. Basically we sneak some sort of potato product into Paul’s wine when he isn’t looking. This year it was tator tots. This was all Avery’s doing this year. I am so proud of her. She even saved some tots from dinner and was able to get him again later in the evening. As it turns out, the more you drink, the less watchful you become of your wine glass. Avery is learning some real life skills. Ethan’s about the same today. His appetite is down. He feels tired. Avery has been so kind to him. She does a great job of taking care of him. He vomited again when we got home. I communicated it with his doctor to let he know what was going on. He then got his appetite back a little bit. He ha...

What a beautiful day. The sun was out. Phineas went swimming. Ethan walked around by the lake.  He got some sunshine and fresh air therapy today. I brought some pillows out and set up an Adirondack chair. I padded it with pillows for his boney butt. He was frustrated that he was so tired as well as his mouth hurt. He is sporting a HUGE canker sore. Like his mouth needs another insult. His appetite is down. We have an appointment with endocrinology on Tuesday.   His spirits are ok. Just ok. Not great. Not terrible. Just ok. That is today. Tomorrow might be better or worse. We did have some bright spots today. Family time being the biggest and brightest spot.

Ethan vomited around 4 am this morning. He was upset. He immediately felt better. He was worried because it happened twice in less than 12 hours.  Today was the first day that he felt half way normal-ish with his mouth for breakfast. As the day went in he developed a nasty canker sore. Luckily he has his magic mouthwash. We had a nice day by the lake today, complete with a bon fire. Ethan was outside for a bit but stayed inside mostly.  The sun was out and while it was chilly, it felt good. Paul forgot his sunglasses. I told him he could borrow mine. He said that they would likely be too “girly” for him. I pretended to take offense. “They are not girly. They only have a few Rhinestones and maybe an animal print.” I felt very generous offering up my glasses. It seems Paul was desperate. He wore my glasses all day long. He looked fabulous in them. Ethan was in good spirits today. As long as he is, I am too. I am also glad that there was no more vomiting after 4 am.

Today was more dialysis training. I am pleased with how it is going. I think I am getting the hang of it. I am excited to see how well I do on my own. I will probably make mistakes but that is how I learn. As long as I don’t kill Ethan, I will consider it a win. We have come this far, so killing him is unlikely at this point. I have my BFF dialysis nurse as my cheerleader. I am picking him up his cheerleading outfit next week. Today was the first day that I have taken both my kids out to lunch since before covid. Both kids sat across from me. They have similar features. I feel an overwhelming sense of pride looking at their little round faces. I am so thankful I have them both. I read about another parents loss in one of my Heart Transplant Pages I am a member of. This mom lost her child this week. I cried for her. It is hard to even process how close we were to that. We were teetering this line for a while. A lump forms in my throat just thinking about it.  Hug your kids. This mom...

We had dialysis training this morning. I was in a much better place mentally today. I am going to miss all the fun I have with my BFF dialysis nurse when I do this at home. I may lobby to the admins to have extra “support” from my BFF dialysis nurse for an extended period of time so that I can continue laughing. It is a purely selfish request. I was told that tomorrow I will learn how to do the “sak test”. I am not sure what it entails but I am going to stretch extensively tonight. The sak test. Can you imagine the giggling coming from our room?  When we arrived home, Ethan hopped out of the car and within a few short minutes, had grabbed his camera and started filming, which is a great sign. He is slowly starting to feel better. His energy is slowly returning. He also was pissed about yesterday’s events. When Ethan gets pissed, he gets determined. He was the kid who wanted a toilet, on ECMO, and was trying to get out of bed despite all the sedation and paralytics thrown his way. H...

Ethan got to sleep in this morning. I took a moment to have coffee in the back yard. The air was warmly and breezy. I had no idea what sort of crap was waiting for me to step in. I became very aware, very quickly that I am hitting my limit.  I sat down to write this epic bank note that was strictly all facts and no snarkiness.  I did have to read it and reword a few snarky things. That was difficult. I understand it is part of the process for SSI and they deal with people lying and stealing everyday. I do feel like I have to go out of my way to prove my innocence that I am not fraudulent.  I understand there are fraudulent people out there. I just don’t understand the how? I basically have to submit a note with supporting documents, possibly my left ovary (kidding but I wouldn’t be surprised) and discharge papers. This process started in March. I can’t imagine how people navigate this that are ill and alone.  I was getting mad at the situation. I typed the letter wit...

I was “out of sorts” this morning. My head was swirling with “don’t forget to do this today” and “don’t forget to do that today.” I was over tired and under caffeinated. Not a good mix. I was able to do auto pilot things, but any thinking was super foggy for me. We arrived at dialysis and my BFF nurse right away noticed I was “off”. I really tried to focus but kept making stupid mistakes. I couldn’t read and make sense of the directions. I was fumbling and just trying to get through it. I was strongly fighting back tears due to frustration with myself. He was kind. He insisted sometimes the care giver needs care too. Those were the truest words of wisdom I received today. I did receive other true words at work today and they were “don’t touch that without gloves. It smells really bad.” True indeed! I was upset with the conversations I had with Ethan last night and this morning. His recounting of the torturous ordeal getting the leads glued on his head. He was mentally and emotionally d...

What a long day today has been. The day started off right with my dialysis BFF. I was able to read through the instructions and do them as I went. I did pretty goodish but still am not quite ready to fly solo.we left dialysis around noon. Ethan and I had lunch and then his next appointment started at 2:00. We both didn’t really quite know what to expect. I had an idea of how it was going to go and it was a bit different than I imagined. The lady that was working with us was a bit rough with Ethan. I didn’t notice it at first. I did however see Ethan holding his fist closed tightly, a move he does when he is really upset. I keep asking him if he was ok. In the middle of that going on, I got a few phone calls. One was from Ethan’s transplant doctor. She was nice enough to call and check in with us. I had been emailing her with updates on how Ethan is doing. She was also on “vacation”. She got back to me each time even though she was dealing with a family dilemma. We talked about Ethan’s ...

We had one day in a row of no vomiting. That is a win. Ethan is still feeling exhausted from his anemia. He had an injection last week to increase his red blood cell production and infusions of iron that will also help. It takes 7 days to make and mature red blood cells. My guess is that he will start feeling better by the end of the week. The tongue is still hurting but looks like it is healing. Ethan is also battling a yeast infection in his mouth aka Thrush. Several times a day he does a magic mouthwash rinse, saltwater rinse and then his anti fungal rinse. Tomorrow he gets his leads put on for his 24 hour EEG. That should be lovely. I am worried about when they take the leads off. In the hospital they left small sores without hair that were bleeding. Ethan is going to flip out over that. I am dreading Tuesday when they come off. Today I was able to get Ethan up and outside for a short walk around the yard. The brightness bothers his eyes. We walked around the yard together and enjo...

Today was a day of catch up for Paul and I. Ethan stayed inside and rested. He feels tired. His anemia is kicking his butt a little.His tongue really was hurting today.  Mid afternoon, his stomach began to feel bad. A little bit later, he vomited again. Ugh!  He has been trying to be diligent about all his mouth rinses and the order he does it in as well as his other medications.  He did get to relax for a little bit and play his PS4. He liked that. He started working on some modules for MCC in the fall. Despite Ethan feeling kind of crappy and tired, we did share some laughs today. He was cracking out some funny stuff.I think we all enjoyed a day of staying home. The weather was so beautiful.

Working hard to achieve the goal of home dialysis. Literally the only thing I won’t like about it is that our nurse won’t be with us. We are moving right along in our training. Ethan’s tongue is still bugging him but the mouthwash helps. He has now taken to vomiting from excess saliva in his mouth. So that’s fun. Poor kid. After dialysis I grabbed a quick bite to eat, handed Ethan over to his sister’s s care and went to work. After work I popped by the pharmacy to pick up a new medication they are starting him on. This will take the place of one of his forever drugs that prevents rejection. It turns out that Ethan’s blood levels aren’t within the therapeutic range after weeks of adjusting the dose. This puts Ethan at risk for rejection.  Of course we can’t get the medication because the insurance company is giving us a hard time. It just means more time that Ethan is not therapeutic and more phone calls for me to make in all my spare time. I also had someone from Strong call to sch...

Today Ethan and I headed out for dialysis. Dialysis training is fun. My BFF dialysis nurse keeps me laughing. I am sort of getting the hang of it. Next up is making the connections to Ethan’s catheter in a sterile way. I am ready. I can do it. I feel good about it. Ethan and I went to lunch before his first heart check up after transplant at Strong. We had a wonderful conversation about what we have both been through. I think I am his therapist now. I never had one lesson. Ha! He’s doomed.  He was nervous about his heart check up. He was verbalizing it and I was happy about that. It was a very productive chat. On the way to the hospital, I saw signs for the lilac festival. We took a quick detour. I have never been to the lilac festival and neither has Ethan. We both don’t like crowds. Today was the perfect day. We stopped near the lilacs and walked a small bit. The sweet smells of lilac perfumed air swirled around us. Wow! Dark purple, light purple, white lilacs, they were so prett...

A new day today. Ethan and I headed off to the lab for some weekly bloodwork, got halfway there, realized I had forgotten the requisition form and had to turn around and go BACK home. For a moment I got super pissed and said words that a mother shouldn’t speak in front of her child. I then decided to reframe it. This is something a guy I saw briefly in NYC recommended. It is quite useful. This man was on his psychology rotation. He said some very helpful words. “ when you get frustrated, upset or angry....go through your feelings briefly, then pause and reframe it.”. It’s looking on the bright side.  After my unfortunate slew of trucker pottymouth terms, I paused. “Well, at least we were only halfway there.” I paused. “What a big damn waste of time.” (Then I decided I needed to work a little harder at reframing it after that comment. “We are going to make sure neither one of us has to go through forgetting this again. We are going to keep the requisition in the car.” Ok that was be...

Dialysis training started bright and early this morning. I felt a bit tired. I was paying attention but just felt tired. Ethan got his treatment. His tongue is still so sore. He is getting frustrated with it. We returned home and I went into work for a couple hours.  How is it that I am not working that much, but still feel so tired? I had a lady call to set up Ethan’s MRI for his seizures. At first she was not going to talk to me because Ethan is an adult. I assured her I was his advocate and that the reason my phone number was on file is so that they could talk to someone that knows what’s going on. She was calling to set the MRI up at the hospital. Because it was at the hospital we would need yet another damn covid test. Stupid covid.  When I inquired about having it done at an outpatient center, she said that because he had an ICD he had to have it done at the hospital. I politely let her know that his ICD was removed in November 2020 when he got his new heart. I quietly w...

We started the week out at dialysis training this morning. I am getting the hang of it sort of. I am a bit traumatized when the machine alarms. A zap of panic pulses through my body and I always try to shut it off so I can think. But then I feel like I just went down the hill of a rollercoaster and my stomach feels all weird. I attribute it to ICU and all the damn alarms. So I am learning to address the alarms with adrenaline stomach. That’s fun. Sarcasm. Today we met our new nephrologist. He was really nice. Ethan liked him too. I had to reach out to the NYC team today because Ethan is in agonizing pain from where he bit his tongue. “Bit his tongue” is a little bit of an understatement. He actually has a hole or indentation in his tongue from where he bit it. It has developed a quarter sized sore that is white but also has bruising under it that looks like a blob of grape jelly.  He is having a hard time talking because it is so sore. It has also stifled his diet. They prescribed ...

 I was gone most of the day today. Ethan was a bit tired from his activity yesterday. He had so much fun. He had wanted to put up a YouTube video but his tongue was really bothering him. This is still damage suffered from the two seizures when he bit his tongue. It is throbbing and giving him pain. He is pushing through it. Stupid tongue injury. It is preventing him from eating well. He’s getting there day by day. Tomorrow is week 2 of dialysis training. We will see how that goes.  My bright sides were full of time spent with a friend, Mother Nature and all of her gifts of sunshine and wild animals being cute. 

Ethan had a super fun day. He got to go to cars and coffee at The Little Speed Shop. I was bummed I couldn’t go. He went with Paul. I was at work but when I got home Ethan’s eyes were twinkling as he told me how much he enjoyed seeing all his car friends. He also told me he walked around and filmed so he could share in his YouTube page. I then left and went in a road trip with a friend to explore a “haunted” penitentiary.  I left Paul and the kids behind and had a day full of laughing, driving and exploring. I stayed up until almost 5 am on Sunday. I can’t say that I regret it. It was nice to leave all my responsibility behind for a moment.

There is nothing like taking your son to your mammogram appointment. My appointment was at 6:45 am. It’s another item checked off my donor screening. Who doesn’t love a good boob compression first thing in the morning.  We went directly to dialysis training after that.  I had my training with my fabulous new BFF dialysis nurse. I was sort of  over everything and then I took a sip of coffee and realized there was none left in my travel mug. I started to downward spiral a little bit. I was taking deep breaths and giving myself a pep talk....”you can do this!”  Then, he shared we were going to watch training videos. Imagine my face when I found of this fantastic new piece of information. I sadly looked at my cup and muttered something about how sad I was that I drank all my coffee. He took hardcore pity on me.  He was so kind and made me a coffee.  I knew I was going to need it. I didn’t realize how much until we stayed watching some pretty hilariously boring ...

“I wish I had a normal life.” This is the statement Ethan made today. It makes me a little jealous of our former lives. It was a simpler time 2 years ago. But this is our life now. We have lots of appointments. We are juggling a lot of balls in the air. It is what it is. Today Ethan had dialysis, then eye appointment, then tutoring, then PT, after I dropped Ethan off at PT, I took Avery to get her 1 st covid shot.  It’s a whirl wind for sure. It will get better. Ethan has been feeling worried for his upcoming tests. He is afraid he will be admitted or they will find something bad. He has an overwhelming sense of doom for these appointments.  We are working through it. It is hard to hear your kids struggling mentally and physically. He is really worried for the kidney transplant evaluation. He is so worried he will have the same trajectory of a recovery similar to his heart transplant. There are no comforting words to offer from my mouth. “Yeah, you have legitimate concerns.” T...

Ethan woke up sore from physical therapy yesterday. So I made sure we got some sunshine therapy today as we walked the field which works out to be 1/4 mile ish around. Later in the day we went out again and jogged a little of it and walked the rest of it.  He was huffing and puffing but he DID it for a short distance, twice..... I was able to schedule a few more appointments coming up. The traveling all over from appointment to appointment gets old quick but we are doing it.

Today I worked on planning my kidney donor testing. This is in preparation for us going to NYC for work up. I have 31 lab tests, a 24 hour urine collection and evaluation (sounds fun) and then I have to drive to a specific lab for blood collection that is about 40 miles away. They wanted a fasted and NO COFFEE sample, 😳 plus a visit for a mammogram and OBGYN. THEN I will get a CT scan, Xray and EKG. Let’s get this party started. I am trying to figure out when the best time to schedule this will be. I don’t want to have to lug around a cooler with my urine collection jug in it “just in case” I am at dialysis with Ethan and nature calls. So it may be interesting. Dialysis was hilarious. We got there early to continue learning. Today we used the actual machine that we will take home. However, our nurse was never technically trained on this particular machine as it is new. It takes 23 minutes to prime the machine. We went through all the set up, which isn’t hard, just time consuming. We g...

Today was day 1 of training for dialysis. Our nurse is fabulous. I love him. However, my only complaint is that when the dialysis wizards came up with phrases to use within the dialysis world they did not take I consideration, working with someone that had a stunted  7 th grade maturity level. I had a very difficult time keeping a straight face. When I was introduced to the “snap and tap”, I busted into a leg stretch and said “oh the snap and tap, I haven’t done that since college.” Luckily he shares my sense of humor. This is going to be fun. Then he started talking about the dialysis “sack”.  I just shook my head in the “no” motion. He is making this too easy. I am going to get kicked out. Am I being punk’d? “Sorry Ethan, mom got kicked out....you are on your own.” I might as well start practicing this line. We are playing around with the dialysis schedule to work around Ethan’s class. I am very proud of Ethan. He was attending class with his dialysis machine hooked up, you ...

Happy Mother’s Day to all furry and non-furry Mother’s. Being a mom isn’t always easy. It doesn’t come with a manual. Pretty much us mom’s make stuff up as we go. Appreciate your mom’s, appreciate you kids, appreciate your furry little creatures. Think of those that lost their mom’s or children. Heavily on my mind today is the mother aching over the loss of her child so I could spend more time with mine. It’s a gift so priceless that I can’t even begin to explain it. My kids are a pain in the ass sometimes, but man, do I ever love the crap out of them. My heart is full on this day. As I enjoyed being around my favorite people, I did hold close the kids still in ICU, sick, with their parents wondering, “are they going to make it?”.  What about the nurses, many of them moms themselves, spending the day away from their own kids to take care of someone else’s kids. I am thankful for all I have. I feel richer than royalty with the supportive and loving family we have. Happy Mother’s Day...

We got up early to head back to the lab to try again today. I want Ethan to have a day off but yesterday the lab greeter squashed that. So we headed back to the lab. The cranky lady wasn’t there. Phew. There was a new lady there. She asked me the slew of questions about covid. She asked if Ethan has had a covid test in the last week. “Yes, he had one yesterday.” “What was the result?” She asked.  Crap, I didn’t even look because I am 99.99999% sure it was negative.  “I have to log into mychart really quick and I will let you know.” I have mychart on my phone. I have facial recognition to get in so I don’t have to type in my password EVERY time. Sometimes I check mychart more than 10 times a day depending on what is going on and who I have sent an email to. I pulled down my mask (I was six feet away from everyone except Ethan) for a split second. “Mam, you need to keep your mask covering your nose and mouth.” I paused and made eye contact with her. “Did you want the result....o...

I was quite frustrated this morning. We went for bloodwork for our timed blood test. We showed up early and when I gave the script to the lady, she told me that there weren’t any tests on my script that were timed. I pointed to the timed test which is why we have to drag our asses out of bed and rush in the morning to get this test done. I didn’t present it like that. I used a nicer tone for sure. We normally get it done on Thursday’s but since we didn’t get home from the hospital until almost midnight Wednesday night/Thursday morning, we pushed the test off until today.  The lady looked at me and told me it would be an hour wait time. At this point it was 8:30. The time the test should be drawn. Ethan’s class starts at 9:00 am and he is due for his rejection drugs at that time too. Frustrated with the situation I left. I called another lab and they gave me the same line. So we drove home and I stewed over the lost time, lost gas and frustration. Now I have to ask for clarification...

We made it home last night around 11:30 pm. Paul came and picked us up at Strong even though he had to work today. He stayed up late and got up early. I was very thankful. Ethan started his medication to ward off seizures. It is a low dose to be kind to his kidneys. We will see if it works. Of course Ethan is nervous that he will have another seizure. I am nervous about leaving him home. I am going to give it a few days and see how things are going. Luckily he is a little more aware of cues that a seizure is brewing. Today Ethan had a break from the shit tornado that seems to be our life right now. He even mentioned that it was nice to have a minute to rest. We weren’t rushing off to the next appointment all day long. I did have to call in 9 prescription refills to one pharmacy and two to an additional pharmacy. I confirmed things with home dialysis for next week, send a bunch of emails and talk to some people. However, it was nice to stay home today. I spoke to our home dialysis nurse...

Today was interesting. Ethan joined his class and was participating really well in class. While in class, I was fielding phone calls from insurance, neurology in NYC, and infectious diseases in NYC (will never get over this name).  The infectious diseases called me to set up an appointment. This has happened before. It’s a recording saying we need to set up an appointment press 1 to hold for a receptionist. I press 1. Today it was 13 minutes I held to talk to a live person. Then that person told me there were no appointments in June available and we would have to come several days ahead of time and miss several days of work to accommodate their request. I asked what the appointment was for and the person responded with “ a follow up” appointment. This seems to be many of our interactions with trying to coordinate appointments. It is frustrating. I know that offices only have specific time slots available and doctors are scheduled a certain way. I gave them a 3 day window, 6-7 weeks...

Ethan was feeling overwhelmed with school and appointments today. I secretly was also overwhelmed.  Coordinating our kidney transplant evaluation in NYC  in June for Ethan and myself has been involving a lot of phone calls and prep work. One day is totally full of appointments for Ethan so far. I have two other offices setting up appointments, one office is donor testing for me. The other office is coordinating an appointment for Ethan. Then I set up the appointment with neurology in Rochester which involves two visits 24 hours apart. I am finding that I have to look at my calendar each morning so I know what I am supposed to be doing. I even started including things like “meds” for Ethan. I also decided that I should dip my toes back into work. I went into work today for a few (5) hours. It felt good to be back. It was nice to see my coworkers faces and get my hands on some furry creatures to shower them with my love whether they wanted it or not. Telling them how cute they a...

 Today was a good day. The weather was nice this morning. Ethan got some sunshine therapy. I made a call to neurology over at Strong. I called the pediatric department because that was the number I was given to call and schedule with. When I spoke to the receptionist, she said we would have to schedule with an adult neurologist because of Ethan’s age. I told her that I thought that may be incorrect and politely asked for her to reassess the situation. She said she would look into it and call me back. She never called back so we will try again tomorrow. Ethan was rightfully nervous for dialysis. I am going to add “therapist” to my resume.  Maybe it should be more honest and say “uncredentialed therapist”. We chatted about it. And I think he did really well considering how nervous he was. We made it through dialysis and Ethan wasn’t hospitalized. That is one time in a row! Yeah! Tomorrow is another busy day.

Sunday’s are the days we get the medications ready for the week.  We had a typical day today. It was low key. The focus was on eating. Ethan weighed in at 98.6#. He is feeling good.  We all needed a day of rest. We had some good family time together.  Tomorrow I will call to schedule the neurology appointment for Ethan. He will have to have an EEG, where they measure the electrical activity of his brain. It won’t tell us exactly why he had the seizure, it will give us clues about it. Ethan is focusing on what he can do, instead of what he can’t do. He is doing well with that.  He is going to focus on his plan to rebuild a drift car since he can’t drive for a year. This project has been in his mind for a while. He was going to do it a bit later but with the change with the seizure, we reprioritized. This will keep him occupied and not focused on what he CAN’T do. Ethan mentioned that all the things he loved were being taken away from him. Hell was creeping in again. I...

 We spent the night in the hospital. Ugh! Once we finally got to a room (around 11 pm) it was decent. We had our own bathroom. Ethan and I slept like crap. We were discharged this morning and went to our eye appointment. Ethan got a fresh new pair or bandage contacts.  We came home. Dorothy was spot on. There is no place like home. Ethan spent the rest of the day working on taking in calories.  I would consider today a win. We are tired. But we made it.