Ethan’s Journey

 After my physical, I discussed getting established with a dermatologist and a cardiologist due to family history. I need to take care of myself to help take care of others right? I called two different offices. The cardiology office the person I spoke with was delightful and even gave me a tip that would avoid me frustration at my appointment. I got off the phone with a pleasant feeling about the cardiologist. The second office was dermatology. The lady I spoke with had the personality of a dried up cancerous mole. She was not pleasant at all. I wonder what the training protocols are for customer service there that are different from the first office.  I am a delight when I call. I try to be upbeat in case the are having a bad day, agreeable and don’t share too much. I am direct. “Good morning (I am chipper) I would like to make a new patient appointment.”  The rash (I am going to call her rash because she was as pleasant as a bad rash.) was just hating her job today....

 Today I had my annual physical. Why are appointments so exhausting? They shouldn’t be. I think they suck my energy.  In the waiting room there was an older lady. She had to be a little hard of hearing due to the volume of her voice. She needed to call her ride and there was a phone near the exit. She was unable to complete her call. Something was withholding the call from going out. I let her borrow my phone. She cracked me up. I was happy to help! I put on a lovely paper towel gown and everything. Basically I am pretty healthy but need to exercise more. Yuck! Who wants to do that? I wish sleeping was considered exercise. I would be ripped! My Mom and Gene are starting a new chapter today. I am excited for them on their new adventures. After work, I did some chores. Ethan and I had an unspoken date to watch our show. Paul bailed and scheduled a man play-date with a few friends. He has been running ragged the past several days.  Rain, rain  go away!!!!!!

 As I was sitting at the hospital yesterday, I found myself curious as to how they can improve efficiencies. It took 20 minutes for someone to come up with a wheelchair for Dario. There has got to be a more efficient way.  I found myself coming up with a bonus system so that there is incentive for speediness. I was trying to structure this fake system similar to Uber. The more people you transport the higher your wage. But it also ties into the people’s score of how you do. If you talked about something inappropriate or are rude, the patient can deduct stars butting you in a different pay class. Like I know anything about human hospitals, their payroll or anything. It was fun to think about it though. It’s very egocentric of me to think I could solve a problem that I am sure people with far more brains and specific supportive education are in charge of. Welcome to my brain. Ethan and I arrived at the hospital for his appointment. It seems like I was just there yesterday! Becau...

 Today I went to be with my in-laws while poor Dario was still in the hospital. It is nice that we have a strong family unit and we come together during times it is needed. Dario has charmed the nurses. Even the nurses that weren’t his, today, stopped by to say hello. I picked up Joanne and we headed to the hospital. I follow the directions to his room exactly how Paul described them to me. He gave great directions. We had a bit of a  vehicle switch this morning due to my van having a temper tantrum with the wheel bearing. Paul took my van, Ethan took his car so I could drive his winter jeep. I guess that is the advantage of having more cars than I can count. We got to the hospital with the promise of Dario being able to leave today. He had to show them he could do one thing. He tried but was able to. Minutes turned to hours. They brought him lunch. Lunch was 3/4 cup of soup, 1/2 cup of peaches and water. This was consumed in 12 seconds flat. This man eats! He eats a lot of fo...

I am hoping we have a break from the rain.   Ethan’s yard needs to dry out so he can move forward and have his floor poured. Paul’s dad is getting a little better each day with hopes to be released tomorrow. I will be on hospital duty for the day. We want an extra set of ears to make sure we are setting him up for success at home. I am so, so thankful to be able to work remotely. I do have a few calls to make tomorrow and will have to find a “quiet” spot somewhere to be able to conduct interviews. This week Ethan goes to the neurologist for his annual seizure check in. Basically it is to continue to have a valid doctor/patient relationship to continue prescribing Ethan’s seizure medication. Ethan has no interest in discontinuing the medications and has been advised against it. I popped by Avery’s for a quick minute. I was able to give her a hug and drop something off for Kendall. She is almost done with the semester. Woo hoo! I think she is excited to start her summer externship. E...

 My Mom and I started the day with coffee.  We chatted and she worked on things to get ready for her move. The car was packed up and we were off.  We had a few stops to make before getting to the new place and unpacking a few things. I got a tour and saw why she and Gene chose this place as their next home.  It’s funny when you walk in to an empty space and it feels exactly that, empty. It only comes to life after you have made it your own, cozy spot with your own cozy people. I had fun exploring and seeing all the possibilities for Mom and Gene to have fun, stay busy and eat well! Paul’s Dad is feeling better and is likely going home tomorrow. Paul and his sister have been instrumental being present and offering support. I situated a few things when I arrived home. I did a few chores. Ethan had already fed the dogs which was a helpful surprise. I turned a show on and Ethan ended up joining me. Paul arrived home and got sucked into the show as well. I don’t read book...

 Mid day, I piled Penny, Ferguson and Jiminy into the car to go to the vet. Our vet is amazing and happens to be a good friend of mine.  I stopped to buy her lunch because she was taking up part of her lunch hour for the three dogs. They needed their vaccines and bloodwork.  They are getting their teeth cleaned in the next 1-2 months. Ferguson is almost 14. If his bloodwork is good, he may be going to the ophthalmologist for an assessment of his cataract. He is having trouble with depth perception and seeing. So if there is something he can have done to help with that, I was to at least explore what it entails. Jiminy likely has at least a few teeth that need to be removed during his dental cleaning.  I am proud of all three of my little dogs. No one tried to bite, scratch or even make a sound for any of their pokes. If only that would rub off on Moe….Ha! I went to my mom’s for the evening. Ethan came over as well. He was going through some things in my Mom and Gene’...

 More tests came back today. All negative for bad stuff. Yay! Ethan feels almost back to normal.  I have started watching the Netflix show called Lucifer. It’s cute and makes me laugh a bit. I recommend it. You don’t have to pay too close attention to all the details so it is great to have on while I am working. I had a nice chat with Avery this evening. We got into a thoughtful conversation about human behavior. She offers a different perspective that I can appreciate and enjoy. Ethan was pumped because the mid-west is having some weather events. He watches them live. He gets so excited about nasty storms and tornados. He was blowing Paul and my phone up with pictures and updates about the tornados. It is nice to see him get so excited over it. To be clear, he gets excited over the weather portion. Not the destruction it causes. He has always had a fascination with weather. A little bit too much like my dad. It is a bit upsetting to me. I can’t imagine my neighborhood flatten...

 Ethan seems to be feeling better. Much better. The doctor said that all of his screening so far has come back negative and we needed to change the rejection medication doses just a little bit to compensate for potentially processing his medications differently. The doctor also wanted to add in another medication that will help lower Ethan‘s LDL (bad cholesterol). He has been struggling with this number being too high. His Team did try that other medication. That is the one which threw his kidneys into a tailspin as a “rare side effect”. We had to discontinue due to decreased kidney function His Team wants to start a new medication.  I’m worried, so I did some reading. I was researching if his current medication will have any contraindications with his new medication. and I found out that it typically doesn’t. We all know that Ethan‘s not typical.  As I dug a little deeper, I discovered some “rare” side effects. I reached out to the team. I voiced my concern. I learned th...

 I woke up this morning and checked on Ethan. He said he slept through the night and felt well enough to go to work! Yay! He stomach was still a little out of sorts but improving. The bland diet is helping. He continued with it all through today but is quite sick of it already. More tests came back. Negative for the nasty viruses that transplant patients can get. Rejection medication numbers were within the range they want him to be.  The swirling and twirling anxiety subsided for me. Ethan is supposed to get an MRI next month with contrast. We are meeting with the nephrologist to see if that will be ok. Ethan’s GFR is down to 36. Normal is above 90. They stop giving contrast to patients with a GFR below 30. We are getting close. 😬 The MRI is to get specific images of his heart and will be important to have a baseline. So fingers crossed. Ethan laid low after work. He ate his bland diet. He did participate in the conversation. He was even crackingPaul and I up. Paul had to ma...

 Ethan was up in the night with more stomach upset. This time he was nauseous and feeling like he was going to vomit. I sent a communication to the transplant team and tentatively scheduled an urgent care appointment. Ethan chose to call out sick which he has never done. Not even with his pneumonia’s. Yesterday he said “NO URGENT CARE” today he is waving the white flag. I am proud of him for recognizing that he needs a break. I have to be careful and make sure he knows that HE is calling the shots and I am just here for guidance. We talk through all the options and the pros and cons of each. Then HE chooses the next step. I started moving some of my appointments to this evening. It hit 9:00 am and I called the Transplant team. I received a call right back directing to go to the lab to rule out some bacteria overgrowth as well as assess hydration, electrolytes and rejection medications. We had to collect a-hem….a sample….to be tested. We went to the lab. And waited and waited for ab...

 I figured Ethan would be run down a little bit today because of his long drive yesterday.  He kinda threw a curve ball. He was planning on going over to my Mom and Step Dad’s house. It was a little bit before and he told me he felt “weird”.  He had mentioned earlier that his stomach was a little off. He had off and on cramping.  “What does weird mean?” I asked him. “Like I am chilled today and I don’t know if I should go to Mema and Beba’s because I don’t want to get anyone sick. I almost think I have a fever.” I checked his temperature and he was 99.7. Not bad but in true Ethan fashion, not normal. I needed more information and began my “subjective”. We use SOAP notes in veterinary medicine.  S-Subjective - you collect information on the owners/patient’s (in human medicine it would be the patient) perspective of their ailment. O- take actual measurements and factual data. Temperature, pulse, blood pressure, weight. A-Assessment- the doctors reviews the subject...

 Today I saw an ad for “Last Minute Memorial Day Outfits”. Ummmm…..are these outfits for 2025? We have well over a month to Memorial Day. What the heck? Also, am I the only one that will wear the same clothes on Memorial Day as I wear any other day of the week? Then I was annoyed. I was annoyed at the ad, annoyed with people who wear Memorial Day outfits. Just annoyed. I looked down at little Jiminy all curled up and sleeping. HE NEEDS a Memorial Day outfit. I have a tiny top hat that looks like a flag. He will look dapper in that! I am sure someone will get annoyed that I dress my dog up. So I guess that is a wash. It was so beautiful out today. Our yard is so mushy. There is visible standing water on all sides. Paul was pissed because he “couldn’t do anything” outside. He proceeded to fix a friends car (outside), dig up some weeds (outside), troubleshoot out gutter situation (you guessed it, outside). I had the windows open on ever side of the house. I was chuckling because he wa...

 Last night I tried something different. I used one of Ethan’s old mold-able rectangles and placed it under my back to sleep. It’s like a plastic bag with play-doh in it and it was helpful for Ethan when we had to worry about bed sores. I laid on my back and it created my back to flex in the opposite direction of sitting. The small of my back was pushed towards the ceiling. I slept the entire night like that. I wouldn’t say it was comfortable, but it wasn’t so uncomfortable to keep me awake. I am really good at sleeping. This morning I figured I was either going to be significantly crippled or feel much better. I was delighted that my back felt pretty good. So weird! I was busy after work today. I dropped off stuff at Goodwill, picked up groceries, went to the ATM and on my way home I got a call from Avery. Paul had told her to drop her car off at the house so he could remove the snow tires and put regular tires back on it. Avery needed a ride back to her apartment. She met me at t...

 April is one of my least favorite months. I don’t care for the yo yo in temperature, the massive amounts of rain or stepping outside to see Lake Diiulio in our front yard growing even bigger. April shower might bring May flowers, but it also brings mud and lots of worms on my driveway. Sooooooo many worms. So many worms that it SMELLS like worms outside. Yuck. Why do I know what worms smell like? At least we have had impressive lightening shows and good cracks of thunder to enjoy. I have been enjoying watching my flowers growing. Don’t get me wrong! April is still terrible. I have decided that my favorite jelly beans are the Nerd jelly beans. I bought a bag on clearance. Only one bag this year because I am trying to make somewhat mature choices. I really just LOVE jelly beans. I went down and saw my Mom today. She is a trooper. Her eye is scratchy and watering and healing well! Yay! Her other eye is bloodshot and bruised too. I got to see her battle wounds and thy were impressive....

 Today was uneventful. I sent communications to the kidney transplant team to set up Ethan’s next appointment. He has been feeling ok. He still gets tired.  My mom is doing good after her eye surgery yesterday. I am going to see her tomorrow.  Moe enjoyed the nice weather. I tied him out on the front porch to lay in the sun. He loved it! You can’t see it but he did have a leash on just in case someone was near the yard. Sarah came over after work. The rain started shortly after. Rain makes me tired. I barely made it to 9:00 pm without falling asleep.

 My Mom had surgery on her eye today. I went along to help.  When we arrived at the hospital, I hopped out of the car to get a wheelchair for her. It was pouring rain. The first wheel chair I grabbed looked like someonepeed their pants in it. Nope! I went to the next one and it was dry. Mom quickly got into the wheelchair and we got out of the rain while Gene parked the car. I asked Mom if she wanted to do wheelies, but she did NOT want to do that. Ha! We went to the surgical center and got her all checked in. We waited and waited and they finally too I he in the back. I stayed in the waiting room out of the way, quietly working. The other people in the waiting room were pretty respectful. No one was obnoxious! Two plus hours later and they finally took her back to have surgery. She did great! When we went to see her afterward she was still groggy. The nurse gave her a choice to make “Do you want to get dressed here or in the bathroom?”  Mom replied “I don’t want to think...

 I was excited to see Ethan make a video for his YouTube channel. He shared his barndominium. There has not been any movement on it since a few weeks ago when they put in the insulation. He has been making videos since the 6 th grade. I remember the one where it was a jelly bean tasting. There were good flavors and bad flavors. One flavor was “dog food” and I could smell it from across the room. I was gagging. It was so rancid smelling. Paul and I were going over our plans for the next few weeks. My trip is coming quickly.  He quickly realized he has plans each weekend for the next several weekends. Boo!  Our plans aren’t always together.  I have a big project with getting the camper ready and up to my standards of staying in. This weekend I plan to make huge progress. I was able to do some walking today because it was so nice out. Yay!

 Sadly my weekend of fun with Sarah had to come to an end. I did absolutely NO WORK this weekend. When I arrived home, I immediately started making brownies for a gathering at a friends house to watch the masters. Sometimes you have to blow off a weekend and deal with it later. Ethan looked like he was tired. Yesterday he was volunteering at a cars and coffee event and was moving all over the place. It caught up with him and he ended up taking a nap that was a few hours long. Even though he looks normal, he is still quietly fighting his body. If he over does it, his body let’s him know! I feel sad that Ethan has to go through that extreme fatigue. I don’t dwell on it though. I know he is going to end up smelling like a rose. My back has been a little sore. One of my exercises pissed it off and I have been uncomfortable the past few days. I laid on our massage mat to the rollers could really apply pressure to the spot. There is a moveable knot that is sore. We went to our friend’s h...

 Sarah surprised me with a trip to The Wild Animal Park in Syracuse. It isn’t quit a zoo, but has lots of animals and enclosures. It was a bit chilly but the animals we out and about.  We saw tigers, lions, monkeys, otters, warthog, porcupines, kangaroos and more. So cool. I can’t imagine seeing a kangaroo in the wild. We were petting goats and a llama was spitting at me. RUDE! Then I got to cross something off my bucket list. We fed the giraffes. I don’t think I could have been more excited. Their tongues are purple. I read that because giraffes spend up to 12 hours a day eating, their dark tongues act like sunscreen to protect them. Science is cool! There was a Pygmy hippo. It was a male. His male part looked as if it were put on backwards. We learned this backwards anatomy helps them breed a little bit better especially in water. Mating was in the air. The male cheetah was trying to romance  his lady. I explained to a horrified child that they were “playing leap frog” ...

 I met up with Sarah today. This weekend we are just staying local in an hotel for the weekend. I am giving her the gift of time. (It benefits me too, bonus!) We did some light shopping. We have gotten into the habit of evaluating our cashier’s customer service at stores. At one store my cashier was a delight, Sarah’s was struggling. We made up some ridiculous scenario why. We checked into our hotel and out our drinks in the fridge. We did old lady things like go to dinner at 4:30 to beat the crowd (it may have been closer to 5:00 cause we are wild and crazy). We had a nice dinner. Each of us ordered a fancy drink.  With our bellies full, we headed back to the hotel to put on PJ pants. We watched a few crime shows and a move while having adult beverages. Not a bad way to spend a Friday night. My 21 year old self would be disapppointed. Oh well. We all have to chase our joy. My joy is at a restaurant on a Friday night with no wait time! We had several inappropriate conversation...

 This morning’s coffee chat was about the man in Hawaii that assaulted his wife with a rock. He was found guilty. I am not part of the jury, I did not have all the facts. I made my assumption he was guilty after hearing bits and pieces of the trial. Mostly the part where he confessed to his son what he did and then put his son in the predicament of having to testify to put him in jail. What a jerk. I altered my voice to sound like the guilty party in every Scooby Doo episode. “I would have gotten away with it too if it weren’t for those meddling nurses” I mocked pretending the be the man found guilty. Who goes on a walk with a loaded string filled with undisclosed injectable medication? The whole situation is pretty awful. Moe wanted to be outside today. I opened the door and moved his bed so he could be nosy and not bite anyone. He sleepily guarded the house. You can see little Jiminy right by his side. He was not guarding the house at all. Ha! We went to my Mom and Gene’s tonight...

 Paul’s results came back good from his angiogram. He has a dilated (widened) part of his aorta (the vessel that carries blood to the body) but it has been that way for 23 years. They will keep watching for changes. Yay! I went over the warning signs of an issue with Paul. I can’t have him dying on me. He is more valuable alive. Also, who would put up with me otherwise? The mud continues in our yard. What a mess! Mother Nature is really trying to beat down my daffodils. My daffodils will prevail. They are so hardy and no match for Mother Nature’s temperature fluctuations. By this afternoon they were perky again! I let The dogs out this morning. Penny and Ferguson came back, but NO MOE! I peaked out the windows to find him. I just see him sitting like a statue, guarding over the house. I can’t leave him outside alone for long in case a delivery person comes. I am afraid Moe will bite them. He is very serious about guarding! I moved my computer desk so I could watch him. He stayed li...

 I was able to sneak in some fitness today with walking in the driveway. Everything else is squishy outside. I made 75 % of the dogs go outside with me while I walked sit was too cold for Jiminy. He runs away from the door when it is cold. We went over guesstimating for costs for Ethan when he moves into his place. I think he is a little bit overwhelmed at how much being an adult sucks….paying bills…working just to pay bills. I am frustrated with the slow progress of this building. Not enough to insert myself into the mix, but just in general. The weather and wetness has played a large part in the halted progression. This evening Paul went to get a snack. He “looked all over” but couldn’t find the bag of carrots in the fridge. “Were your eyes open when you looked?” I asked trying to be helpful (that is a lie). I knew that clearly his eyes were not open when he looked. I went to the refrigerator and opened the door. There they sat in plain sight. I started razzing him. “They would h...

 Paul seemed a bit nervous today with his procedure. Last night Ethan was telling him it wasn’t that bad and he shouldn’t be nervous. Easier said than done. We chatted about how Ethan has been through so much medically (since he was a baby) and Paul had not. This is a big deal for Paul even though it was an easy procedure. Paul was reading there they will be using radiation for the imaging and panicked a little.  “Isn’t radiation bad for you?” He asked. “Not this small amount.” I assured him. I reminded him that he has been exposed to radiation all over the place. Just small amount. The airport, smoke detectors, ceramic tiles…not all kinds but some kinds. Plus we can even ingest it (potassium 40). I did my wifely duty of keeping the car ride light. I noticed a school for the blind. I pointed it out and I very seriously asked him “Do you think they have a driving school?” We arrived. We went to the floor for cardiology. There were signs all over saying to check in via kiosk. ...

 Paul is having an angiogram tomorrow. I was reading to him what to expect based on Google’s assessment of the procedure. I got to the potential complications.  “While generally safe, occasionally patients can experience a loss of limb due to allergic reaction.” “WHAT?!?!?” He said in a panicked tone “And their penis can disintegrate”. I finished. I burst into laughter. “That does NOT happen!” He said in a very disgusted voice. He called me a swear word. I earned it and was proud of it! We hosted an Easter lunch. We had family over for lunch. It was a nice day and we spent it together. I was able to put daffodil’s from my garden in a couple of vases. They smelled so good. We had a leisurely late afternoon and evening. I practiced looking at the inside of my eyelids for a little bit. We picked out the man doors for Ethan’s barndominium. Paul was returning the favor and was being super annoying on purpose and thinking he was hysterical. (He was mildly hysterical at best.) “Did y...

 Today was fun. I did some chores but also squeezed in brief fitness time. I went to my Mom’s mid day. My brother was visiting for a few hours from Buffalo. We helped with a few things at their house and then had some apple pie and ice cream! Yum! I went to Avery’s apartment to meet with Avery, Kendall and their friend. This friend has the gift of being able to communicate with people who have passed. Some people say they can do this and they are farce. Some people I believe can actually do it.  I have a fascination with this gift. I have my own theories of what happens after we die. I have developed these theories from reading articles, watching people who claim to have the gift and a healthy dose of “my brain fills in the blanks with no scientific reasoning”. I had so many questions for this young lady. She answered them one by one and I was even more fascinated. She did a “reading” where she is able to see pictures in her brain. She explained that she can see shadowy figure...

 I woke up early this morning and started working right away. With the good weather that was rolling in, I wanted to be done early enough to enjoy it. Paul and Ethan got up at a leisurely pace. THEY had the day off! I was not jealous (I am lying).  I want to be very clear that spring is my LEAST favorite season. I prefer the summer and fall instead of the spring. The rain, the mud and the damp, cold air just don’t thrill me. Then Mother Nature throws in a teaser. She says “hey, hang in there, this temperature is coming soon.” That was today. She also throws in an abundance of wind knowing she has to pressure wash the stale winter air out of our house. We know the drill. Windows open, blast the stinky cold air out with fresh, new and much warmer air. Paul did lots of man chores. He has uncovered our camper. Woo hoo! Step one that camping season has started. I went out to assess the condition and I am happy to report that we had no rodent activity! Win! I was able to wip things ...

It is Thursday already. Wow! This week went fast.  I got things set up and am finally reaching a good pace for my schedule. It took a few days to reset and get into the swing of things.  We went out to dinner tonight for a birthday celebration. Dinner was yummy! Cheers! I solidified plans for next week for Sarah’s birthday weekend’s . We are set to go. I put in for my vacation time in May. It is showing my PTO is at a deficit. I am ignoring the fact that I have already made my plans. If there is an issue with my PTO request, that will be unfortunate for the company. I will not change my plans.no apologies on that. Work/life balance is important to me. Both Paul and Ethan have Good Friday off. I do not! Of course I think this is crap! 

I got Paul with ann April Fool’s joke. I told him his paycheck was significantly less than it was supposed to be. He started to freak out a little. “April Fools!” I told him.  I totally got him.  Ethan and I were texting back and forth today. He was sharing that he is obsessing over getting the supplies he needs to make fireworks for the 4 th. He theorized that he feels he has little control of things in his life and he thinks it is so he has something to look forward to.  He has vacation time over the 4 th of July and is really looking forward to that. His friends are going to be joining as well. He knows he can control the fireworks he makes and buys for the fireworks display, control when he gets the supplies and control WHEN he will make the ones he is going to make. We got into a discussion about control. He feels like it is something he has control over. So he is going to move forward with buying the fireworks. He has found a whole sale store and has plans for what ...

 We have begun planning our next tropical trip with Andy and Diane. We are in the beginning phase of planning. We are throwing around ideas. I was invited to “Taco Tuesday” at Avery and Kendall’s. I finally got to meet the infamous Poppy, Kendall’s grandpa. He was so much fun. He loves Jiminy, so I brought Jiminy over to hang out too! Avery’s cat Pluto, was so curious of Jiminy’s. He was almost stalking him. Avery made the taco meat and browned the taco shells. It was delicious! I enjoyed spending time with Kendall’s Mom and brother as well. We are getting saturated  with rain!  There is so much. One corner of our basement is quite damp. Ugh! The dogs are so gross after they go outside. But here is what I am thankful for. Ethan shared that he finally feels like he is in a spot where his medical issues aren’t looming over him. This made my heart warm!