Ethan’s Journey

Dialysis seemed normal today. He took a test for economics. He played a few games on his phone. He didn’t have an excessive amount of fluid taken off. Everything seemed normal. His treatment was normal. His labs were taken. His blood was already returned. We were practically ready to leave. He was talking about what he was going to have for dinner. I looked away from him for a moment and out of the corner of my eye, I saw his arm in the air and it got my attention. I looked at his face and knew. “He’s having a seizure.” I told the nurse who was right there. I am not well versed in human seizures. Ethan has never had one before. He just HAD to make it so now we have to check THAT on all the medical forms as well as all the other boxes. So I did what any other Vet Tech would do. I treated him like a dog. In a calm and soothing voice I repeated “you are ok. Just breath and relax.” This was while I applied ocular compression to both eyes to apply pressure on the vagus nerve. We do this in ...

Ethan woke up and got himself ready for school. He logged into class and attended class. He got done with class and had 15 minutes to prepare for tutoring that started at 10:00. After tutoring we ventured across the city to get introduced to the wonderful world of home dialysis. Our trainer was not only engaging and funny, he made me comfortable enough to play a joke on him. For me, this is a weird compliment. I had to pass a colorblind was test. The first 5 answers I gave correctly. I had to read the numbers on each page. The numbers were either red with a green background or vise verse. After delivering 5 correctly, I gave an incorrect answer...on purpose. He looked at the number and said, no this number, assuming I had read the number on the adjacent page. I repeated the answer. There was a “processing” pause, as he tried to figure out what to do about this situation.  I busted up and said...” just messing with you”. He started laughing. I knew he would make a great teacher. Eth...

Ethan had his standing 8:30 bloodwork appointment. His phlebotomist recognized his veins and remembered him. This made me laugh. I then rushed home so he could join his class for 15 minutes before his 9:00 tele health visit.  We met at 9:00 with his kidney transplant doctor. She was happy to hear of his progress. I again let her know this inpatient, middle of the day, 5 hours time suck of dialysis isn’t sustainable 3 days a week.  We got the ok to transfer. I will wait and see how things go during my meeting tomorrow with the home dialysis adult center and gauge when I can start training. Ethan had enough time to eat until I piled him into the car and took him to dialysis. It went well. Today he has made 150 ml urine. Woo hoo. His kidney values are still Way out of whack!  When we got home, I had fun watching our little dog, penny, hunt for frogs in our pond. She really likes watching them jump in the pond. She is obsessed.  Penny was my bright spot today. She is suc...

Ethan woke up and could not keep his eyes open. They were tearing excessively. He had to attend his zoom class. He made it through class but was having some difficulty seeing because his eyes were tearing so bad. My friend came to the rescue, AGAIN, and got Ethan an appointment at the eye doctor so that he could get “bandage contacts”. His appointment was at 12:50.  As we were driving, with all the eye stuff going on, we realized that I had never given Ethan all of his LIFE SAVING pills this morning. OMG! Induce panic! I said a string of not so kind words, all directed at myself and my stupidity. Ugh! We check in at the front desk. As we waited to be called back, I was trying to send a panicked  “what do I do?” Email to the NYC team. Will this goof up the bloodwork tomorrow morning? How do we treat tonight? Ugh! The NYC team directed me what to do via email. We have now put different alarms in place so we don’t repeat the same mistake. The contacts Ethan got are contacts witho...

Today is a dialysis day. Ugh! We dread these days. I was able to call the other unit that teaches home dialysis. We have an appointment to discuss the next step later this week. I do have to say all the nurses at dialysis are fun and super nice. Ethan’s eyes are really bothering him. He finds it hard to read because his eyes constantly feel like they have sand in them. He tears all the time. We now have learned to take tissues with us when we leave the house. He wears sunglasses a lot because the light can be intense for him. We have learned to adapt. I had to read his schoolwork to him because he can’t keep his eyes open long enough to read and they just constantly tear.  We have an inquiry in with the eye doctor. His poor eyeballs. Ethan is frustrated with his progress and feels like he should be able to juggle his schoolwork load the same as he used to. Luckily the school has been awesome, supportive and I can’t even say enough good things about how much they have helped our fam...

I woke up this morning and sat outside on our screened in porch. It was chilly but I had my coffee experience going on. The cup was warming my hands and I had a nice comfy blanket. The brisk air filled my lungs as I enjoyed the peaceful nature sounds. Our pond waterfall had a nice trickle. The frogs were out on the rocks even though the sun wasn’t out. The neighbors rooster was alerting them that morning had started. The cows down the street were bellowing and I knew it was breakfast time for them. These are all the things I when I was in the busy city. I was able to take both kids to the store today. My first trip taking them somewhere together. I was so thankful to be with them both. When I have these thoughts it makes me think about our donor family. What they would give to have this opportunity with their loved one. Don’t take for granted your loved ones presence for a second.   Ethan had a decent day today. He kept up at the store and wasn’t tired afterward. Wow! This weekend ...

Today is Christmas. We had the Christmas music on. We had the smell of our Christmas quiche baking in the oven. Our tree is still up and the lights are twinkling bright. We always do a scavenger hunts for the kids.  We took the gifts Santa brought and hid them all over the house. It makes it fun for everyone. After our exchanging of the gifts we enjoyed eating the delicious quiche that we all have grown to look forward to on holidays. The burst of flavor of ham, cheese, spinach and egg danced around in our mouths. Yum! The morning reminded us that no matter when it happens, family time is priceless. We all were thankful Ethan was with us. We even got a special delivery of Terri Ann’s Christmas cookies which were a surprise AND delicious! We all enjoyed the day in our different ways. Ethan was feeling very tired but was able to say hello to his old friend, his car.  He started the car and had Paul move it out of the barn. It was nice to work in the garden again. All the dogs ha...

Today we arrived for our middle of the day appointment. I say it like that because of the inconvenience of it. We arrived at 12:15. There was some sort of emergency going on. Our nurse didn’t come over a different nurse did at 12:40. I can understand an emergency and needing all hands on deck.  Then the nurse that came over couldn’t get the pulse ox to work. There was a lab work issue and he wasn’t sure what tubes to use. He then had to set up the machine. He was very nice but it took forever. He kept checking and double checking with another person. (which is good that he was thorough) At the other place, when we arrived, they hooked us up right away and we never ever had to wait. I know he’s a new patient here. I get it, I just want to complain because it was annoying. It’s hard to have so many hours less in your day 3 days a week. His treatment started a little over an hour after we arrived. Ethan can’t do his homework there because he is on a stretcher and the table they have t...

Thank you to my friend Michelle for getting us a quick eye appointment to address the keratopathy’s in Ethan’s eyes. He is really having trouble with his eyes constantly. They are always tearing. Our busy day went as smooth as it could. We will find out more information tomorrow regarding the ongoing pediatric vs. Adult dialysis.  Ethan ate well today. We have to keep a good diary over the next couple days for the nutritionist. He did have a few episodes of nausea but he was able to keep everything down. Phew, it’s hard to watch Ethan become nauseous and vomit but it is even harder to watch all those calories lost. They are worth their weight in gold at this point. Physical therapy went well today. The therapist and Ethan really seemed to connect. He will never find a skill set matched to his PT/OT at NY Presbyterian but this guy was a solid second string.  I had forgotten to mention that when we went to NYC last Wednesday, most of my Sasquatch that I decorated around at NY Pr...

We woke up and drove to the lab for Ethan to have his timed “forever drug” level check with numerous other blood tests. We got home and Ethan was late for school, so he immediately hopped on his classes zoom. He was hungry when he was done. We then got ready to go to dialysis. He is in a bed here. He was in a chair at the other place. Everyone was really friendly. When I shared my plan of home hemodialysis the pediatric nephrologist told me that pediatrics don’t normally participate with teaching and following home dialysis patients. You can imagine my surprise as this has been the plan for the last several months. That was the entire reason Ethan got the fistula. I was frustrated that it wasn’t communicated as part of our long term plan to this new team. I felt like I hadn’t been listened to.  We would have to transfer to an adult dialysis center and be followed by an adult nephrologist which is not what is being recommended. We are going to work through this. There were several p...

Today was our first full day home....for good!  It went well. Ethan had his remote session at 9:00 for school. When that ended, we left for Strong Hospital. We met with the pediatric nephrologist at strong. Ethan weighed in at a whopping 96#.  He has about 34# to go until he gets back to his pre transplant weight.  Unfortunately we have to do dialysis right at Strong. It’s a bit of a hike and right in the middle of the day. I do t understand how people can work with this arrangement. We will find out at some point. Luckily everyone seems nice. This was an issue I was trying to convey to Ethan’s nephrologist in NYC.  They said he needed a pediatric nephrologist. But he has to have dialysis on a stretcher AND at the hospital. There are only two time slots. 8-9 am or 12-1:00.  These are start times. At an adult facility, they have all times of day. Early in the morning to later in the evening. Much more practical for Ethan and myself once I go back to work.  T...

We made it home from New Jersey. Paul was awesome and drove us down. It was so nice and appreciated to not drive. Plus I was able to multi-task and take car of a bunch of phone calls I needed to make.  I had to get a refill on a medication for Ethan. There is a dread like no other when the pharmacist asks “is he taking any other medications?”  And the answer is yes...like 1000 of them....then they proceed to ask the name, dose and frequency of each one. Good thing I had a list and could rattle them off.....I even asked, “would you like the brand name or the generic name?” That phone call took 25 minutes alone. Ethan progressively felt worse as the day went on. He had a wean yesterday of the last pesky drug that he was addicted to. That wean seemed to kick his butt. Fever, vomiting, headache and just overall malaise.  We contacted the transplant team and they advised to give an extra dose of his Ativan today. He will get lab work tomorrow to check all his levels. He is jus...

 Ethan was tired today. Probably because he was so active yesterday. Today is another wean of a benzo. The side effects aren’t as significant as when he would wean off of the methadone. I didn’t anticipate going up and down the stairs so many times yesterday. My calves are so sore. I have been hobbling around like an old lady. We made it to New Jersey. Ethan will get dialysis at 5:30 am and then we will be on our way back home after that. For good. This week will be interesting with all the appointments and finding out how life will change with dialysis incorporated into the routine of home living. It will be an early morning tomorrow. My bright spot is that we are so close to moving forward to home life. Things will get a little more normalish. My other bright spot is that Ethan and I were looking at our pond this morning and counted 27 frogs. Hopefully they will make a dent in the mosquito count.

When I laid down in my bed last night, it was like a hug from your best friend! I was laying on a cloud of soft bedding and had more than one pillow. My roommate didn’t poop in the middle of the night (good job Paul).  The lights stayed off the whole night.  I woke up once to give Ethan a dose of medicine and was looking for my mask in a sleepy stupor. I think I am traumatized by wearing a mask so much.there were multiple times I panicked today because I didn’t have my mask on. It was a brief panic, but I found myself thinking about it constantly. I took a walk around our yard this morning. Our flowers look so pretty. Lots of vidid colors.  I closed my eyes and enjoyed smelling the country air. I heard the frogs singing out, trying to find their spring mate. Such a soothing and familiar wonderful atmosphere. I started to unpack today. What an overwhelming job that was. I have turned our house into a disaster by going through the last 5 1/2 months of stuff that has accumul...

We went to dialysis first thing this morning. 5:30 am in fact.  Why you ask? Because we have been working all week to get ourselves checked out of rehab.  Everyone has agreed Ethan is ready. He has passed all the tests and has proven again that his determination has been successful.  We have known all week this was our plan. We were like little hens all week clucking about our excitement.  Last night as I lay awake AGAIN listening to the roommate as well as he was pushing the nurse button every 5 minutes. He pooped his diaper. Lights on. Toxic noxious smells. Having to ask to have the garbage taken out because that just isn’t common sense. I had visions of fecal particles raining down on us. I can confidently say that I got more sleep when my kids were newborns. I knew I was not even going to miss it a little bit. We have all of our appointments set up for next week.  The only glitch we had was finding a pediatric nephrologist. We could have left Thursday but we...

Ethan woke up not feeling overly great. Another day off methadone. One day closer to freedom from the grips of this awful but necessary drug. Fever, nausea, fatigue....all while pushing through OT, PT, school and Rec therapy. Ethan’s appetite seemed to be the only casualty today. Tomorrow things will be a little better as the day progresses. Ethan had a few scholarships he applied for that were due today. We were able to finish up with those. Like a hero, Paul completed the FAFSA application. He totally enjoyed the experience and wishes he could do it more often(sarcasm). I am pretty sure Paul invented new swear words while filing for FAFSA. We got the news that there was no sign of rejection on the biopsy. WOO HOO! Such wonderful news! I told Ethan that he will never have to go to NYC for his biopsy with withdrawl again.  His test came back that the small begin mass on his pituitary gland is not secreting hormones like it was originally suspected which is also awesome. We will hav...

2:00 am the power goes out. This means that the fan turns off. Anyone who sleeps with a fan knows that this is an automatic wake up call as well as devestating. Then it is quiet until the generator turns on and everything beeps. The power comes back on and the beds start talking. Yes talking in a ladies voice. But the beds were offset a little so one started talking before the other. They were both saying the same thing but out of sync with one another so it was hard to understand.  Then an hour later our roommate had a bowel movement in his diaper. He’s a 23 year old man. The nurses came in with their inside voices. Which doesn’t always happen but these folks were good. They tried to be quiet with their mouths. But the had to turn the lights on, open the packet to get the diaper out, crinkle crinkle crinkle, drop the sides on the bed with a loud clunk clunk. Let’s not mention the toxic, noxious fumes that infiltrate the room and assault your sense of smell. In and out of the bathr...

 I feel like Ethan and I are going insane. It feels weird to be beyond the four walls of our windowless room. We do have windows in our room I am being a bit dramatic, however there is a thin curtain that separates our side with the side that has windows.  We never benefit from the daylight. There is no where but the bathroom for privacy.  Each day that passes is another day just a little bit of our spirit is sucked away. I don’t know if we have just had enough or what the issue is but each day is increasingly harder.  When I go for a walk outside it is weird. I feel like when the walk is over, I have to go back to the cage. There are cameras everywhere, we are being watched all the time.  Ethan was tired and not feeling super great. His pre-procedural jitters. The anxiety is messing with his stomach and making him lose his appetite. Not a great thing for someone that needs to gain weight. Tomorrow’s activities include an early ride to the city, heart cath, hear...

So many phone calls were made today. I don’t even really like talking on the phone that much. It’s the price of being an adult I guess. I feel like an appointment scheduling ninja.  We have made our kidney transplant evaluation appointment in June. This is a preliminary appointment and we aren’t looking for transplant right away. Ethan needs to get stronger first. But we will do it and get further along into the transplant process. That way, when we are ready, we don’t have to delay anything. Today was disappointing at best. We got some road blocks trying to coordinate our discharge. We are currently working through them but man, the email, phone call crap circus I went through was so frustrating and disappointing. Learning how our lives will be different. Learning how our choices will be limited because of the fine line of pediatric and adult nephrology/ dialysis. Ethan and I sat on the edge of his bed this evening. I had my arm around him. We were both frustrated and tired of let...

Ethan did 2 hours of therapy today. Lady Loud was a little better today but Ethan and I went to the lounge and just had the most wonderful chat about life, what to expect in the upcoming months and just a nice talk. He even mentioned he enjoyed it.  He did a bit of work. I caught up on some things and picked up the room. Ethan started complaining his right leg hurt. We ended up stretching and massaging it for a bit so help with muscle soreness. Ethan’s walking is much more steady. I don’t worry about him falling as much. He is doing more and more on his own each day. Today was a good day. No surprise vomiting attacks. Two thumbs up.

Today was my bright spot. Ethan slept in. He had 2 hours of therapy. He then decided for both of us that we would have a day of rest and quiet. Lady Loud was cooperative today. She spent most of her time in the parent lounge and therefore I did not. The room was quiet and wonderful. Ethan and I played a game together the majority of the day. We sat quietly in each other’s company and it was delightful for us both. While he was at PT, I went on a walk and enjoyed the spring sunshine. We are still in a “city” setting and don’t quite have the spring noises we are used to like the peepers and variety of different birds singing. I did watch a pair of kinky birds playing “leap frog” wink wink. Some things never change no matter what the setting. We also received numerous texts, pictures and videos from everyone having so much fun at The Little Speed Shops annual ‘Fun Run 21’. Ethan was bummed he couldn’t be there but vows he will be there next year to maneuver his car around the Watkins Glen...

 I have another gripe about parents sharing a shower.  There should be a sign to keep your time in the ONLY bathroom with a shower to less than 30 minutes. When I woke up, I grabbed my shower things and the bathroom was already occupied. So I made coffee and sat outside the door for 45 minutes who knows how long that person was in there before I showed up. I need to get out of here. We are having a hard time setting things up for when we go home. It doesn’t seem like it should be so hard. We want to transfer to a dialysis center near home.  We are being told we have to be seen by a nephrologist in Rochester, which we haven’t ever had due to this being a new issue. This nephrologist isn’t affiliated with the dialysis center we chose. The nephrologist is with a different dialysis center. So why would we have to go to a nephrologist that doesn’t work with the place we chose? I don’t understand.  I know I don’t understand all that goes into this transfer but I feel like ...

 Another beautiful day outside. I have been taking walks around the neighborhood during the days. I miss walking my dogs. I am enjoying watching the trees blossoming and the flowers coming up. The neighborhood is a bit sketchy and I don’t always feel safe. I make sure to practice all the safety precautions when walking alone. Also, I manage to pet every single dog I see. Bonus points if it is a pit bull. I was able to get Ethan outside for some sunshine therapy. I have noticed his eyes are more sensitive to light after transplant.  We talk about him having to really keep his scars protected this summer.  On our way outside, we shared a laugh. We were waiting on the second floor to go down to the first floor, where security was.  Ethan happened to look over at a sign that had a big red stop sign. STOP it read.  “Are you sick? Do you have a fever? Do you have upper respiratory symptoms or gastric symptoms? Do not visit your loved one.”   Ethan asked if it was...

Being a parent is hard sometimes. You never want to be the bad guy. As our days are full of therapies, dialysis, appointments, we also have to factor in school and daily self care activities.  Sometimes what has to be done, isn’t welcomed by Ethan. I am trying to look at the big picture while respecting the “I am an adult now” 18 year old. We have prepared to let Ethan grow up and push him out of the nest. He is ready to leave the nest..(sort of)....but without the resources and with blinders on. I don’t want to say we are “butting heads” but I am trying to figure out a way for him to take care of his body that he has worked so hard to get to where it is, while juggling his obligations like school and hobbies. Of course his brain is focused on getting home and seeing his girlfriend, family and friends. Trying to get back to a “normal” life that will never ever be the way it was before. It is a tightrope walk and I don’t want him falling. As we move ahead and plan for a release in a...

I woke up this morning at 5:00 because roommate’s mom was being noisy. I am a light sleeper in the mornings so....I made my way to the shower. The door was closed and I was sort of pissed because (like a 5 year old) I wanted to be first. I made coffee and sat outside the door. If I can’t be first, I will be second. 20 minutes later, all my coffee had evaporated somehow out of my cup. What is taking the person so long in the bathroom? Do I even want to use it? I haven’t heard the shower running? Are they in there spreading fecal particles all over the place so when I go in they will rain down on me? Ew! I knocked on the door.  No answer. I tried the door handle and it was locked. Now I have visions that someone had a vasovagal attack during their morning poop and they are just unconscious on the bathroom floor. I went and got a nurse.  “According to my assessment, and I don’t mean to brag but I have already had one cup of coffee and I feel like my brain is working. Either someo...

Ethan went to class this morning in our room. Our roommates mother and the facility staff were very loud and he found it difficult to concentrate with their music blaring.  I was able to secure a place for him for tomorrow where he can actually perhaps learn.  It could be the roommates family member is inconsiderate. It could be that we are just done with dealing with people with no common sense. I found my self very irritated even after I had told her that Ethan would be in class and he would appreciate some quiet time just for about 40 minutes. My patience is wearing thin without anywhere to go get away from people. I day dream about riding in a car alone or being able to do laundry alone or without a mask. So after an adult conversation with the staff we have an alternative solution for tomorrow’s class. It is easier to just solve the problems you have than to create even more with a yelling match. I did have a vision of me asking this person what portion of the dialog was ...

A high school friend reached out to me. She has been following Ethan’s Journey. She shared what life was like from the donor’s side as her young nephew donated his organs when he passed. I so much her point of view. Can you imagine yourself in the parents shoes making that decision?  I had flashbacks of when I took Ethan to the DMV to take his driving permit test.  As he was filling out his paperwork he got to the question of “Would you like to be an organ donor?” He paused. “What does this mean?” He asked.  I remember explaining to him what it meant. I remember saying “If you get to the point where they refer to if you are an organ donor or not, it’s not good for you at all, but it is your last chance to help someone else. Always check yes.”  At the time I wasn’t thinking of families that lose an their organ donor. I wasn’t thinking about families that need organ donation. At that point it was just a question. Just a box to check to get to the next step. While I am ...

I woke up this morning and had my glorious coffee alone in the parents lounge. I allowed my mind to wander and recharge. I set my goals for the day. I like to make a list with check boxes so that I can feel accomplished and check the things off I have done.  Sometimes I put easy things on there like, drink coffee. Then I can start my day with an early accomplishment. I don’t want to brag, but I already had my first item checked off by 7:00 am. And then I started my second cup of coffee. We are a bit late to the college game. Senior year is supposed to be fun and care free.  Ethan’s has been anything but.   With the progress Ethan has made, he has applied to MCC (with help) to their automotive program. This was a big step to actually apply.  I gave up on trying to navigate FAFSA via long distance. Paul to the rescue. Ethan has made so much progress over the past 2 months, by August, he should be doing pretty well and have an established routine to work dialysis into h...