Ethan’s Journey

 I got a call from the hospital. Ethan can discontinue his medication for his lung pressures. Yay!!!!! We have to check his labs later in the week. I have to check mine too so we are going to go to the lab together. Ethan has been having some odd side effects after this last dose increase. He was feeling tired, had trouble with temperature regulation as well as developing the blasted nasty sores in his mouth. Like he needs more torture. We made another adjustment and hopefully the labs will show that he doesn’t need to change much after this. #transplantlife My time is winding down with Heather. I know she will have an adjustment back to “life as usual” with a hearty side of the grieving process. She has a good support system in place. I am lucky I get to be her friend. I will be heading home after some meetings for work tomorrow. I am sure Paul is ready for me to come home. We haven’t really seen each other since Friday.

This morning was tough. We headed out to the cemetery. Heather borrowed a fancy coat from her friend. It was a black floor length coat with faux fur cuffs, collar and faux fur around the edge of the hood. It was glorious and fancy. We made it through the cemetary service. Heather just wanted to relax for the rest of the day. I did have some work to do, so we hung out at her house for the afternoon/evening. We spent the evening chatting and laughing at goofball things one of us has said or done. Tomorrow’s plan is to repeat today (minus the cemetery (because that would be just cruel). I am thankful that this happened after my back was fixed, otherwise I wouldn’t be able to be here.  Today I was also thankful for the day Heather and I met. She has given me joy, time and time again…..Some people come and go (not many because I am an introvert) then there are a few wonderful lifers that are a staple of my existence.

 Today was a long day. My good friend survived calling hours and funeral. Afterward was a delicious dinner and get together at a local restaurant. It was nice because it allowed Heather to mingle with everyone that loved her and loved her dad. Tomorrow we will head over to the cemetery and then collect memerobilia from the funeral home. My trusty van has a big trunk we will utilize for this task. Today was really nice. My friend, Heather had written a eulogy for her father. She stood up and read it. She made eye contact with the proper people. She had a perfect recipe full of half parts humor and half parts sentimental. She executed it beautifully and we all agreed she should be a public speaker. She hated this idea. Ha! I learned that her father was the guy that would ask “what can I do for you?” We would all benefit if we said this a little more. Maybe the world would be a kinder place. I watched Heather grieving, but still being a role model for her kids as this is the first death o

 I woke up this morning and decided, by popular demand, to do some food prep. Paul was out of town snowmobiling, so I could make a mess of the kitchen without bothering him. I had some vegetables that I needed to use up so I made a veggie soup. I thawed some tomato purée I had made from fresh garden tomatoes in the fall. Yum! I used that to make a batch of crockpot chili. Then I made some meatloaf that I paired with some green beans for Paul. Lots of yummy lunches and dinners (if I feel lazy) for us. I gave a few of the dogs a bath and washed all their bedding and caught up on some work stuff.  Avery came home from her friends house and we hung out together. Ethan had been home all day but the only exchange we had was when I said “good morning”. He has been in his room all day. Too cold to work in the garage. Tomorrow I have a calling hours to attend away from home. One of my favorite people, her dad passed away. I am going to spend a few days with her. My goal is to make her smile onc

 Phew! Today was a long day. I started working around 6:30 am and finished around 8:00 pm. Don’t feel too sorry for me though. I was able to sneak away for lunch with my mom, Avery and her friend. I also didn’t work that much on Wednesday and it caught up with me. I finally had to stop because I felt really tired. I just decided to call it a day.  I will be back at it tomorrow. It was quite chilly out today. Thankfully I had the fireplace blazing all day. The animals were quite appreciative. They were freezing their butts off outside.  I am looking forward to sleeping in tomorrow. 

We got the call today that Ethan has zero rejection. His biopsies are negative. Yay! We are still waiting for the doctor to review the lung pressures to see if we can kick one of the medications to the curb! We then went out to dinner. It was quite slippery. I was really worried I would bust my butt. Luckily I didn’t. I am looking forward to summer. Happy 80th Nana!

Our day started out in the area that Ethan gets his biopsy done. We get in there and they start doing routine vitals. His oxygen level was good. His weight is steady. Then they moved to Ethan’s blood pressure.  Nurse “is his blood pressure normally high?” Me: “No. How high is it?” He hasn’t had high blood pressure since after his heart transplant when all of the poop hit the fan. Nurse: “158/98” Me: ……..”He’s normally spot on…..” my brain started spinning….what else could cause it to be high? We haven’t had any real changes. In animals, sometimes it can be high if the wrong size cuff is used. “Is the cuff too small?” I asked. Why is it high? What is wrong? The nurse agreed to try the next size up blood pressure cuff.  Blood pressure came back within the normal range. Phew! I joked with Ethan that his guns have gotten way to big for their cuffs. He had his biopsy. I reached out to our Butt Nurse. She normally didn’t work on Wednesdays but she was there. I met her in the family lounge an

 We left on time today. Ethan seemed less stressed than our last visit. The last visit was an annual and more invasive.  Avery drove for a few hours. While she drove, I was able to get a bunch of my work done and that was helpful. I hired 3 more people today and I am one hire away for meeting my goal for this quarter (which ends 3/31/23). We arrived just before rush hour. Thankfully. Traffic was still bumper to bumper with an average speed 30 miles under the speed limit, but it was SO much better. Earlier I got a call from the hospital and were told we had to be at the hospital at 10:30, indicating he would have his biopsy around 11:30 and then the echo which would likely put us on the road back home around 2:30-3:30. What a long day. I immediately and kindly asked/reminded them that we typically are the first appointment of the day. This was going to be horrific to share with Ethan. I was told, unfortunately, we had to go second. I had a downward panic spiral.  “Please….if there is an

Last night went terrible. I got 2 hours and 53 minutes of sleep according to my Fitbit. I felt it all day today. I was grouchy, my muscles were stiff from all the stairs I did yesterday. Anytime I bent over I would grunt and grown. My nose was constantly runny and made me sneeze all day.  Other than that, today went well. At lunch, Avery, Rachel and I took the dogs on a walk for some sunshine therapy. Tonight we visited with a good friend. We ordered Mexican, had a margarita and spent the evening catching up.  Tomorrow I am going to wrangle up the kids and try and leave earlier in the day to avoid the horrific, New Jersey rush hour traffic. Wish us luck. Here is the cute picture of the day….

  Ethan sat in the living room for a while and watched the NASCAR race. If felt good. I love when we get these little gifts from him. He was even snuggling Jiminy. Jiminy has a way of always making him smile. He does his crooked smile that I love so much. He looks good. His face is filled out. He has muscles. Rachel spent the night and I enjoyed the chattering that she and Avery did. The giggling and being Seniors in high school. I loved it. Paul and I took all the dogs (except Jim) for a long walk. Jim doesn’t really enjoy the leash and he is so timid, any time a car goes by he thinks he is going to die….so he stayed back and happily sat by the fire. We walked probably about a mile or so. A solid 20 minute brisk walk. I am trying to work my endurance back up. I don’t enjoy exercise but it is a must. If I disguise it as ME exercising the dogs, it doesn’t seem as bad for some stupid reason. Paul was nice enough to listen to me just babble away. I am sure Ethan is feeling stress about th

Today I had time planned with Avery and Rachel. We went to the store. Before I left, I asked Ethan if he needed anything. I let him know Avery would be joining us for our upcoming trip to NYC.  Avery is going to help drive so that I can work. He didn’t even seem phased by it. I had prepared for a battle. I was thankful it didn’t go to that. Ethan has also been managing him medications. I have stepped back and let him take over. I do ask every few weeks if he needs a refill on anything. I realized that he hasn’t been taking his thyroid medicine since December. We were denied coverage for some reason and then my back misbehaved and I forgot all about it. Live and learn. At least it wasn’t a rejection medication.  Avery and I left the house and picked up Rachel. We thrifted for a bit then hopped over to another store to pick up household items. I walked in the store and was greeted with the most friendly and exciting sight! JELLY BEANS! My favorite are the Nerds ones.  I of course tempora

 I had time this morning and asked E th an if he wanted me to go with him yo get his Covid test done. He said yes.  I didn’t realize it would be a drive through thing. When we arrived at the building I parked the car and went in.  I had ethan stand in line to check himself in. The lady on the other side of the counter was built like a refrigerator. Her grey hair was slicked back and placed neatly on top of her head in a bun. She did NOT exude friendliness at all. Her face was similar to Nanny Mcfee’s. She called out “NEXT” loudly even though Ethan was the only person in line.  He explained that he was there for a Covid test. She  matter of fact my told us to drive around to the side of the building as they don’t want people coming into the building if they have Covid. I wanted to tell her that I wasn’t that stupid, but I just walked away and got into the car and drove around the side of the building.  We had to wait several minutes for her to collect all of her supplies and paperwork.

 I woke up with a heavy chest, sore throat, and congestion. I haven’t had a cold in a while and man…I haven’t missed it. I felt tired all day.  I feverishly cleaned anything I touched and wiped down the knobs, faucet handles, and drawer pulls periodically throughout the day to keep everyone from getting this non-sense. Anytime I blew my nose, I washed my hands. They are now dry and gross…. But hopefully clean and germ free. Ethan went and picked up his prescriptions. He has to get a Covid test done tomorrow to prepare for next Wednesdays biopsy.  I am off to bed early to hopefully get some needed rest and heal this cold. I drank lots of water today and took some immune system boosters. 

 I woke up congested. Yuck! Ears plugged, fatigued, throat sore. Is it a byproduct of the weather? I tested for Covid. Negative so far. My nose was plugged in one side and running on the other. I wanted to shove a tampon in the one nostril, but figured that wouldn’t go over well at my meeting this morning. I was excited about my post op appointment today. I was hoping to get cleared for things like stretching. My range of motion is horrible and I still struggle getting my socks on.  When I got there, I asked my many questions regarding what is normal and if I could exercise. The doctor answered all of my questions and put me at ease as my right side, I have sciatic pain intermittently. She said that it likely was due to the nerves still healing and that is pretty common. My left side is really good. When Paul got home from work, he said “How did your appointment go?” Me: “ it went ok but they told me not to do any house work for the next 6 months.” Paul “No they didn’t, did they?” Me “

I was thinking about Valentines Day and how it is such a commercialized holiday. It is so nice to celebrate people you love without spending money on crazy gifts. It is also nice to let those around you that may be struggling, know they aren’t alone. Unfortunately, we have a few people in our friend/ family group that are facing hardship. I got thinking about the people in our lives that are struggling right now. I remember what it was like to be in survival mode and have a holiday thrown down your neck! I didn’t care. It was another day of the week. Each day was focused on surviving it. If I had a shower, that was a bonus. Survival mode peals back so many layers of what is really important. Is it a $50 bouquet of flowers? Is it a diamond necklace? Or is it knowing your significant other/friend or child will wake up tomorrow and make it through another day? To some, this holiday is extremely exciting. Maybe they found a new love of their life. To others, they are widowed and missing th

Today I plugged away at work as well as unpacked from our trip. A little of this, then a little of that. I did some walking outside, up and down the stairs multiple times and all around the house. I made dinner and cleaned up afterward. Then Avery needed help completing her scholarship information. I have a document that I log all her achievements, community service and awards on. Somehow it got deleted.  I tried to restore it multiple ways on multiple devices. Before all this started, I had been laying down because I had a head ache. This didn’t help the headache at all. Luckily she had the information saved and between the two of us was able to complete what she needed to. I decided I better call off the rest of the day with a long nap until tomorrow morning. Hopefully my head will feel better. Stupid headaches.  I did 8993 steps today.

 Super Bowl Sunday. I am not really a football fan. I did watch the game, sort of. We had it on and I was doing “work”. I have a busy day tomorrow and needed to get some stuff done for work to get my week set up favorably. Some commercials made me laugh or amused me. I was blown away by the simple but excellent National Anthem. Wow! Normally I cringe when someone steps up to sing the National Anthem because I don’t enjoy the overly dramatic, trying to hit 9 octaves, reverb singing. Chris Stapleton’s version gave me goosebumps.  The half time show wasn’t my “cup of tea” but I did appreciate the visually stimulating elevated platform and use of color. I did know all of the songs she sang, BUT I am in the group with all the other Gen X-ers….last years half time show will be hard to beat for me. Just my opinion. We made it home from our get-away. Back to reality. I have my post op appointment this week. I am hoping to be cleared for physical therapy. I am finding that if I sit too long tha

 It is fun pretending you aren’t actually an adult with responsibility for a few days. Today was a little slow moving at first. Then everyone went on a ride on their snowmobiles. I stayed behind with the dogs and did some cleaning and chopped some vegetables for soup. I started a fire in the fire place and something went wrong. Smoke started rolling out from the glass on the doors. It came out of every part of the pipe leaving the house and even the top of the fireplace. I am not a stranger to fireplaces. I had the damper open and the smoke was still rolling out into the house. It cause a big Smokey mess and resulted in me having to open the windows and doors. Paul called me to let me know to meet everyone at a local restaurant to grab some lunch. I hung up with him and couldn’t find my van key. Paul had driven my van last. I did set out on a quest to find them but failed. Once Paul arrived at the restaurant he called me asking me how far away I was and I told him I couldn’t find the k

 Today I worked. when the work day ended, it was nice to hang out. We ate a homemade meal of deliciousness and pasta. The best part was that I didn’t have to make it. The evening was spent playing card games, dice games and there was a generous amount of gambling happening. After I won once, I stopped playing. Paul k we enough to walk away when he was up. My back gets sore if I stand or sit too long. I have to change positions often. Towards the end of the night I had to go lay down to alleviate the soreness. I know I have to be patient, but it is annoying. Jiminy played with his girlfriend, Chopper. These two hit it off. They play well together and even look for each other to instigate a chase. Jiminy was all tuckered out. The best thing about hanging out, is listening to all the side conversations. You have to listen close for some good one liners. I had so much fun giggling off to the side at all the inappropriate comments that were made. That is a true gift. 

Today some of our group left early to go snowmobiling. Not me. I wasn’t feeling so hot. I may have had a little too much overindulgence yesterday. I slept in. I didn’t even start work until 10:00. I tucked myself away in the bedroom to have a little bit of quiet so I could work. Jiminy helped me work by letting me listen to him snore. Isn’t that nice of him? While I was working I could hear everyone telling stories and laughing. I chuckled to myself as I could hear every word clear as day. The group left to go off and make the best of this rainy day and I finished working. It was ok. I am someone that needs to recharge their batteries and I welcomed the time to recoup. The men cooked up some steaks. It was fun to visit and join their laughter after work. I may have hid a giant pair of “soiled” ladies panties. They weren’t really soiled. It was a Reese’s peanut butter cup chewed up. But they looked soiled. I hid them under someone’s pillow. It did cause a good laugh. We spent the evenin

 I went for a walk on the snowmobile trail today. I didn’t go too far. It was really pretty. It was quiet in the woods.I really enjoyed the smell of pine in the air. While my day wasn’t very exciting, I had fun.

 I spent the day getting ready to spend time with our friend group for the week. We rented an air bnb and had our specific items we all needed to bring.  We weren’t supposed to leave today but we decided fairly last minute to do so. It was a bit of a scramble but well worth it.  The evening was spent spending time with friends. I have missed this trip for the past couple of years and it feels good to finally be a part of it. When tomorrow is not guaranteed, it is best to seize the moment. We laughed and made memories. Conversations intertwined and we all enjoyed on another’s company. I kept thinking about how thankful I was to share this series of moments this year.  Tomorrow is a day that will be spent snowmobiling. I will not be snowmobiling, I will be working. I will make sure a nice meal is ready when everyone returns from snowmobiling though.  I am happy to be able to work from anywhere. 

Today I spent the majority of the day on my feet. Phew! I am tired. This evening I laid down on my heating pad and I immediately felt exhausted.  As I was laying there I heard the dogs running around like a herd of elephants. They were playing and happy to be chasing balls and “killing” the little stuffed lamb. Avery had a friend over and they worked on homework. I made cookies in between the things I was doing at work. I don’t normally bake but we will be with friends and I wanted to bring a treat. Avery tested the cookies and gave it two thumbs up.  I submitted more bills from the hospital from 2020 and 2021 to our insurance liaison. I roll my eyes at this stuff. How are they seriously still finding new charges to add? I am thankful that Paul got over 1100 views on his maxi pad video. 😂

Today we had a resting and healing day. I would do a couple things and rest then repeat.  I don’t really appreciate the mud with all the paws going in on out of the house multiple times a day.  We then got ready to go to a surprise 80 th birthday party for Nana. It was fun to surprise her and see her talking to her friends. Dario did a good job planning this so Joanne didn’t suspect a thing. The meal was really yummy and we got to talk to a lot of people we haven’t seen in quite some time. Life has been pretty crazy the last couple of years and I do feel like I have been out of the loop for a long time. Ethan went, and I made him wear jeans and a button down flannel. He looked quite presentable. He did refuse to sit at the table with us and eat. He sat off to the side and got his food to go. But he showed up….so is that a win? I think so? Avery and I went to the bathroom and I noticed they had free sanitary lady products in a basket. This is a fancy establishment so of course they woul

I woke up in the middle of the night to use the bathroom. It was 2:30 in the morning. As I walked by Ethan’s room, his light was peaking through under his door. He was still up. When I woke up in the morning, I expected Ethan to sleep in. It got to be noon and we hadn’t seen him, so I went upstairs and knocked on his door. He was up and I wished him a happy birthday. He said thank you.  I asked him if he still wanted Chinese for dinner. He had decided he may want Mexican instead. At dinner time, we ordered dinner and Paul picked it up. When Paul arrived home and I went up to tell Ethan it had arrived.  He asked if he had to eat it with Paul and I. I told him we would like that but it wasn’t required. He said he would like to eat alone in his room. We also had cake and ice cream waiting so we could celebrate his birthday, give him his card and small gift. Paul and I ended up having cake without him. He didn’t come down stairs for over 3 hours after the food arrived. I had since put his

Today was the last day of Ethan’s teenage years. Tomorrow he turns the big 2-0. When I pointed that out to him, he let me know his teenage years ended in November 2020.  I wish he could appreciate what a survivor he is for not only himself but his donor, Nicole. I was happy however, that he spent the day with his friend doing car things. He spent the entire day there, having, no doubt a fun time. I’m am so glad for that. Avery came home from school and took a nap. I woke her up trying to quietly placing a Note near her saying that Paul and I are leaving. Oops.  My mom sent a nice dinner over and that was yummy! Paul and I went to a friends house and we were able to visit while he helped them do some things mechanically to their snowmobile. I didn’t help at all. I don’t excel at that, so I was likely helping by not helping. We got in our car to leave and it was 1 degree out. O-N-E degree. The snow was crunchy. When the snow crunches be with your feet it is 20 degrees or less out. I lear

Happy ground hog day! Today was my two week anniversary of my surgery. Besides weakness, I am feeling really good. I rotate between sitting and standing while I work.  Ethan’s birthday is coming up. He doesn’t want to do anything really. He doesn’t feel like it is special at all. He loves Chinese food though. We are going to get take out. I also am picking up an ice cream cake which he really enjoys. He will leave his teen years. He has seemed to be in good spirits. I saw him the other night watching Jiminy. He was sort of laughing at Jiminy because he is so goofy. He then quietly went to his room. He took Jim with him. Jiminy spent time in Ethan’s room again today. I brought Jiminy upstairs with me and talked to Ethan and then asked Ethan is he wanted to hang out with Jiminy. He said “sure”. Jiminy proceeded to walk over to Ethan and stick his Burt right in Ethan’s face. Nice dog! He learned it by watching Paul. Paul has a car part on the kitchen table he is doing something with. At l

 Jiminy has been sleeping in bed with me. The original reason was because I could not keep the fire going while Paul’s was gone all week last week. It was just too soon after surgery.  The fireplace is in the room we keep Jiminy, Phineas and the rabbit to sleep. Jiminy gets cold very easily so I was bringing him to bed with me. He is a good co-sleeping buddy. He snuggles in my left armpit and doesn’t move.  Last night he woke up coughing. I suspect his sinus’s are whacky because of how big his head is and the pressure etc… he always has a runny nose. When sleeping he often falls asleep on his back with his paws in the air.  I think his sinus’s get a little watery and it drips in his throat causing a cough. Poor guy.  It was a boring day at work. I was able to catch up on a few things. I worked on my steps. Ethan, Paul and I went to the store. Ethan didn’t go in with us but he said he wanted to go. Avery spent time with her BFF, Rachel, because it was Rachel’s birthday. They went to din