Ethan’s Journey

Jiminy had his surgery today. He is now neutered. He can never pass his horrible genes on, which is good. His horrible genetics,  that make him such an angel. This little dude is so loving. Loving, that is, until he has to be injected with something. As soon as he gets the injection, his horns grow, his eyes glow a devilish, fiery red and his little fang teeth are out for the taste of blood. His high pitch scream bark could be heard echoing throughout our small community, as he was given his premeds. One poke. With the tiniest of needles. Very dramatic and theatrical. His vet missed her lunch to do his surgeries. It was her 12 hour day. Vets are extraordinary people. The best thing about being his nurse is making sure he is doped up and comfortable. He is sleeping away peacefully with the benefit of opioids.  Ethan had a half day of school today and was able to catch up on some school work. That is always beneficial. All in all, today was a good day. I am ready to have this week over.

 Ethan didn’t go to work today because Covid has it’s claws in some of Ethan’s coworkers. He is being safe by staying home.  Somehow we got into a conversation about money. He schooled me on “star notes”.  A replacement banknote, (star note) is a bill that has been printed to replace a busted up bill and used as a control mechanism for the government to know which bills have been reprinted. Since no two serial numbers can be the same, a star is placed at the end of the serial number to indicate it is a replacement.   We ended up finding a few star notes in some of the bills we have. We then looked up the value on eBay. Some of the bills we had were worth like $40 more than the face value of the bill. One of the bills similar to the one I had was being sold for $1900 more than the face value of the bill. Who is buying this??? It was all stupid fun. It was nice, just the two of us.  We also started watching a show called “Life after Death”. It is a docu-series about what happens to peopl

Last night I got some much needed rest. As fast as my cold came, it left. Yesterday I was hacking and blowing my nose. Today…..nothing. So weird. I am so glad. I had to call the social services office to verify what Ethan’s primary insurance is and also his secondary insurance. You would think this is a straightforward question. I got two different answers on two calls. Ethan is working with a provider that doesn’t accept his insurance. The provider is really good. I don’t want to waste time to switch providers and start all over again. I am at the point where I am going to pay out of pocket just to get the services Ethan needs. I really dislike our current healthcare system. However, I don’t have a solution for something better, so I am accepting what I can’t change. I got home from work and Ethan was napping. We go for bloodwork on Saturday to make sure there is nothing with the kidney that is causing Ethan’s tiredness. I do think it is mostly tied to mood.  Again, we will control wh

Last night I hardly slept at all. I was coughing and congested…my ears hurt and I had a constant tickle in my throat…….basically…super attractive. I am feel like an old, deflating tire that has tire rot. When I got home from work, Ethan was napping in the couch. Depression is exhausting for him. He has been pretty quiet these days. Withdrawn.  My heart was happy for him when he went with Avery and another close friend to go “shopping”. They did teen things all afternoon on Saturday. Potty training the baby in 18 degree weather isn’t the best. Poor little Jiminy. He gets so cold. But he has to learn to be a dog.  Dogs go potty outside. He will get there. I am going to bed super early with the hopes that I will sleep for a few solid hours. Fingers crossed. Happy Birthday Sarah!!!!!!! ❤️❤️❤️

 1 year ago, Ethan and I finally walked out the door of Columbia and made our way to the rehab facility. We were one step closer to home. We reflected today about how long we were gone. We have come such a long way, but there is so much farther to go.  Ethan got the call not to go into work tomorrow because one of his co-workers tested positive for covid. I am so thankful Ethan got the second infusion of  covid antibodies. As I prepared Ethan’s weekly medication tonight, I was looking at all the bottles of pills and vitamins. It has dwindled down and will continue to do so. We go back to NYC towards the end of April. We are getting closer to the 6 month mark where we can discontinue even more medications. Ethan just got the approval to go to every other week bloodwork. That is a win. The weekly, timed lab visits sucked. If we can get a week in between….we will take it. They usually take about 14 -16 vials of blood each time. Ethan keeps plugging along. While time seems slow for him, he

I am so thankful I didn’t have to work today. I was able to finally rest my achy sinus’s, my congested head and plugged ears. I still did a few things around the house.  Jiminy practiced going to the bathroom on the outside of the house. I actually have the time for him to do so. He had a lot of wins today.  Ethan, Avery and their mutual friend went and did some teenage things together. They ended up back at our house watching a movie. I know that Ethan REALLY needed that. Ethan was bummed because a guy at work tested positive for covid so they are going to have Ethan skip a few days of work next week. This little puppy has nothing but love to give. I am thankful he found us. He brings us all together.

I am still feeling like my ears are plugged but my throat doesn’t hurt as bad today. I am coughing my brains out.  It can be easy to get frustrated about being sick. However, the real bright spot is in the fact that I only got sick due to people not wearing their mask…..because Covid numbers are down. I didn’t see much of the kids today. Ethan worked until 6:00.  He likes the “work with your hands” jobs far better than the alternative.

Today I got into a conversation about survivors guilt with someone who has suffered/suffers through it. It helped me understand a little better perhaps what Ethan may be feeling.   My scratchy throat developed into a sore through, cough and post nasal drip. I felt tired. I felt light headed every time I stood up. I wore a mask at work to save someone else from catching my funk. Cough drops and water were my friends today. I had a bit of a salty attitude mostly because I was doing the best I could just to get through the day.  Paul shared I was snoring last night (what? Ladies don’t snore Paul). Apparently I was like a saw mill. He had to sleep on the couch, triggering his sciatic nerve to get irritated. Man, we are a mess….. Ethan spent the day doing homework and working on his car. Jiminy cuddled with him all evening. Jiminy….the dog I never knew how much he needed to be in our family. (He peed outside again today…so proud).

Made it to our appointment a little early. Our Uber driver knew where he was going today. Thank goodness. We got to the infusion center early. They took us in AND Ethan’s doctor found us and had his visit while he waited his 1 hour to make sure he didn’t react from the injections. While there, we discussed Ethan’s MRI in August and she is going to reach out to the neuro-endocrinologist to make sure they are using kidney safe contrast.  She also explained that due to Ethan’s one kidney and past history he is still considered having “kidney disease” as I am also considered to have “kidney disease” due to only having one. I never realized that.  Ethan’s mental health could be better. It’s hard for these transplant kids (and adults too) to process everything they have been through. Then throw in transitioning into adulthood. I again sit in the driver’s seat of the bus to helplessness. Waiting on the sidelines offering suggestions from my unqualified thoughts until he decides to accept help

We had two successful pee pees outside with Paul. Ha ha, just kidding, with Jiminy. Little dude is learning what stairs, grass and baths are. The picture is because I think he is so darn cute with his fat head and rotten eye. Ethan and I arrived in NYC with a beautiful day to drive. The traffic was minimal. Ethan gets quiet and down on these trips. He gets stressed walking into the hospital. The smell. The sounds. The familiar pleasant faces at the front desk. The not so friendly face at the front desk.  There is one person that never fails to be miserable every time we go. With a face like a bulldog, and an attitude of a chihuahua, this person is one person we try to avoid.  Hopefully they will do both butt injections at the same time like last time. Ethan had to drop his pants and bend over sticking his bare butt out the last time. So embarrassing. It will keep him safe. I just feel bad that he has to sit on his sore butt cheeks….for 6 hours. In preparing for a stressful day tomorrow

 I had a long day at work. 13 hours. Ugh! I am getting too old for this. 13 hours on my feet. 13 hours on my bunion. When I got home, I got the most wonderful gift. After trying to get Jiminy to poop outside since last Thursday night, tonight was the first night that he pooped outside. WOW!!!! He was so silly today. He jumps around like a baby goat. We leave tomorrow. We will spend the night. Wednesday, Ethan will get two more butt injections to protect him from covid. Then he will have his nephrology appointment following the butt injections. Should be a good time.

Ethan FINALLY drove the supra today. It has been since October 2020 since he has driven it. He never got a chance last year because of the dang seizures. He was SO happy. He has plans to drive it to school and work tomorrow.  We are slowly seeing Jiminy’s personality come alive. We have been potty training round the clock. So far it is hit or miss….mostly miss. His poop is smaller than my pinky so it’s not that big of a deal. I spent extra time with Penny since she was feeling pouty about not being the “baby” anymore. She secured her spot in my lap this afternoon. 

 This morning as I walked out to my car to go to work, I was dodging worms. There were earth worms everywhere. I like earthworms. They make the soil for my flowers, fruits and vegetables nutrient rich.  Also, I think it is the only animal that’s face….looks exactly like it’s butt…..so….that could be used to it’s advantage. Spring is coming. Ethan bonded hard with Jiminy today. This is completely unexpected but very positive. Ethan has been feeling lonely and sad. He has been wanting to connect with people his own age. This has given him a purpose. He loves this little dog. He was even telling me how to train him (really?) it was cute. I have to work in the morning. Avery is coming to help with possible c-sections on a couple dogs. There are possibly 4, so we may be elbows deep in puppies. I am glad she likes it. For all the time we have lost with each other, this gives us more time together. She is willing to get up at 7am on a Sunday to be with her mom. That….is a WIN!

Poor Avery didn’t feel so hot today. She stayed home from school so she didn’t pass whatever she has, on to someone else. She is staying away from Ethan to hopefully keep him cold free. Day one: potty training……(NOT on a pee pad) status -failure. It’s ok. It seems that Jiminy has not been on grass, dirt or stones and the big, scary cars driving by are a disruptive. I am getting a feel for Jiminy’s eye sight which I don’t think is very good. Ethan got home from work and did his homework with Jiminy on his lap and Ferguson on his legs. Ethan is going to help design a protective helmet for Jiminy, with his 3D printer, since a good portion of his skull is not formed. The other dogs have been accepting of this new little guy. They have even played. We are now establishing a new routine, transitioning food and meeting new dogs. It has been quite a day.

Well, we did something completely unplanned. We added to our furry family. His name is Jiminy. He is a 5 month old, special needs chihuahua. He has an excess of fluid on the brain and a bum eye. His skull isn’t completely formed. He needs surgery on his eye. He’s broken. He is a medical disaster, like Ethan. Avery was my poor influence as she supported me in my venture to add more to my plate. I am a middle aged, dog collector with an excessive amount of love to give to them. Each pet I have ever had has taught me valuable lessons I have been able to use within my job to help others. Whether it is a behavior thing, learning about handling of different breeds etc. Paul said “Really????……4 dogs?”. It was followed by a significant eye roll and grimace. I explained that really it’s only two dogs because with all their weights added together it is still less than 25 pounds. Avery backed me up like one of those repeating birds. The fun thing about Paul is that he knows when it gets to this p

 I had the day off today. It was a true day off. I didn’t make any medical phone calls. I didn’t have to do any paperwork for the state. I didn’t have to submit receipts. I didn’t have to drive to any pharmacies and fight for Ethan’s medications. I didn’t go to any appointments (because I forgot I had one and just never went).  We had our new bed delivered. Our old bed was purchased about a month before Ethan was born. As you age, life becomes more exciting with purchases like a new bed, new toilet or new roof.  Avery practiced driving today. She took me to two grocery stores and then we went across town and came back during rush hour traffic. She also practiced driving at night in the fog. Ethan worked all day today and says it was a good day. He is excited to work on his car tomorrow. The weather is getting nicer and he isn’t freezing to death in the garage. The sun was out. The flowers are starting to bloom. I didn’t have to give Ethan dialysis….it was a really good day.

 How are we supposed to keep up with this? Bills, bills, bills. This is just one days worth. It’s a constant assault. ….impossible to keep up with.  I was able to check off some important things off my “to do” list with SSI. Winning! I submitted some paperwork they needed. Of course they don’t email and prefer a FAX. Ugh! I despise faxing.  Weekdays are full of work and adulting. Weekends are for fun. The trouble is…the work to fun ratio is a bit skewed. Luckily, tomorrow is HUMP DAY!!!! One step closer to the weekend.

 Huge win today. I was able to get the pharmacy on the same page as the insurance company. I was able to pick up new prescription at lunch right before my chiropractor appointment (still paying for that bad decision to go snowmobiling…..literally) and one right after work. Maybe we can go longer that 3 days and spend less than $50 doing it? What a positive change that would be. The weather was so nice that when I got home, Avery and I took Phineas for a walk. We met our new neighbors (they moved in like well over a year ago) they seem nice. Paul and I chatted about his adventures snowmobiling on Sunday. He comes across some odd people. It was fun to listen too. I ended the day by setting my calculator to wake up in the morning. Read that sentence again. I then realized, my phone calculator would NOT wake me up…and properly set my ALARM! Time for bed.

Avery and I went to “Drag me to Brunch”. We went with a few other people and had a fantastic time. The music was fun. The food was good. The company was great. We both smiled and laughed until our cheeks hurt. I asked Ethan if he wanted to come with us, but he politely declined. He said that wasn’t really his “scene”. He is not one that enjoys dancing and singing. However, it was a comedy routine as well. Avery drove us home from the city. She is still working on driving and the more she can get experience, the better. We still have a ways to go. Paul went snowmobiling, so Ethan spent time in the garage. He is looking forward to warmer weather. It gets cold out there. All in all, it was a decent Sunday.

I went to the pharmacy today. Our transplant coordinator has been working on us getting a refill for one of Ethan’s medications. After battling it out with the insurance company, our coordinator let me know that it was ok to pick up the medication. The pharmacy has only been allotting us a 3 day supply (every 3 days) at $52 each time.  Today I was under the impression it was ready for pick up. There was another 3 day supply at $52 waiting for me. We should have a 21 day supply. I emailed Ethan’s nephrologist while at the pharmacy and she responded back immediately (on a Saturday). He had to be discontinued for now until we can get to the bottom of it next week. Sigh. This system is so broken. Ethan was feeling a bit down today. I feel so helpless. He has good days and bad days. He says he is happiest at work. 

We have to go to NYC for a check up in a week and a half. It will be an expensive trip. Today I was thinking about what a pain in the ass these trips are. They require careful planning, time off of work for both of us and time away from family. I started to get into the trap of being annoyed and then it hit me. The alternative is not going at all, because Ethan didn’t survive. I then felt silly. After I removed my head from my butt (with much lubrication because it was pretty far up there) I then thought about how lucky I was to get to make this trip. I thought about Colie and how her parents would give anything in the world if this meant they got to spend time with her. Perspective is a funny thing. 

Today went by quick. I am feeling tired but accomplished. I am planning on making some progress tomorrow with Ethan’s medication. I will also have to stop by the other pharmacy as he has meds ready there too.  I am getting cranky with all the running/calling around. Today I had our Rochester neuroendocrinologist call and request imagine from last year from NYC. I added it to the ever growing list. Ethan is feeling pretty darn good these days. I am thankful for that.

Ethan has been working for a while. He needed help with some paperwork and so I was on speaker phone with him and his boss. Normally I would have had Ethan just deal with getting the info he needs on his own, however, today I was called out of convenience.  While I was talking in the phone to Ethan’s boss, I remembered a time, I believe it was late December of 2020, when I so terribly missed hearing Ethan’s voice. I missed seeing his non vacant eyes. I was unsure of what his future was. To get to see him thriving at work, is a gift. I was glad he was filling out the paperwork. I was proud of how far he has come. We had another appointment with NYC nephrologist, Ethan’s kidney levels are still high. They crept up a little higher this week because he wasn’t drinking as much. He can’t fake his way through that. It is an adjustment going from having significant fluid restrictions to having to drink your brains out. We still go for our weekly blood draws. We are still trying to fight with i

Another day and more drama. I sent a note to our transplant team letting them know we were unable to get Ethan’s medicine filled yesterday. The pharmacy called and said I needed to talk to the insurance company because they are classifying his prescriptions differently now that he has already had his kidney transplant. We needed a pre-authorization. The insurance company said that I needed to talk to the transplant team. Our coordinator, whom is a rockstar, tried to get a preauthorization but it was denied. She filed an appeal but the insurance company said we would have to wait another 72 hours for a decision on the appeal. We would have to go another 72 hours without the medication he needs. Ugh! Let’s add in that I am trying to get this accomplished while still completing tasks at my job. This is impossible. The only way we found to get a few days worth of medication is if we basically pay for the 3 days with a kidney. Since I don’t have a spare, we had to pay over $50 for the emerg

We got our power back on mid afternoon today. Finally. Ethan’s classes were cancelled. He ended up just going to work for the entire day.   I got an automated call from the pharmacy letting me know Ethan’s prescription was ready. I thought this was awesome because I thought I was going to have to chase people around to get it pre authorized. After work, I showed up at the pharmacy, when I asked for Ethan’s medication they said it wasn’t ready. What?  “I got a call saying it was ready.” I was thinking she made a mistake. Had I known it wasn’t taken care of, I could have worked on it today. “No, it needs preauthorization.” She said. “How am I going to know when it’s ready?” I asked “We will call you” Me: …………….. Me: “but you called me today.”  Am I missing something? Lady: “Once you get the call saying it is ready, you can call us to check.” Me:……………… “ok” Seems counter-productive. I know that girl can’t fix the broken system, but really? So he is going without his medication today! I wi

 The first day of teaser spring weather is always exciting in upstate New York. Our windows were open. It smelled earthy and fresh. The wind had gusts of 70 miles per hour…so everything that wasn’t anchored down went flying including all my papers on my table. My parents had a saying when I was little. “Go outside and get the stink blown off of you.” This was a very common saying I heard and have incorporated it in my parenting. I had the dogs “get the stink blown off of them.” I told the kids to “get the stink blown off of them” and i even took myself outside to “get the stink” blown off of me. Then my brother called and he asked me “Did you go outside and get the stink blown off of you?” We laughed about how ridiculous it sounded. I can see bulbs peeking their heads out of the soil. I don’t particularly love this time of year, mostly because of the abundance of dog poop in the yard and the mud from their frolicking paws. Of course we lost power. Our power went out around noon. We got

We are in a much better spot this year than what we were last year. Ethan was still in icu a year ago. We went to get lab work today. It was a pain in the ass because there is usually an hour wait. Today was no different. People everywhere were a little cranky because they have to wait. The employees working their butts off trying to just get through all the people waiting. There always seems to be one person that feels the need to verbalize their thoughts on the situation even though nothing can be done to change it. One lady had a 3 year old for blood work. I am so thankful that Ethan has to get this bloodwork done as a 19 year old. We did our share of medical appointments at that age and I don’t miss it. At least Ethan doesn’t require constant entertainment. We can have conversations about life. They took their 14 tubes of blood, like every other Saturday and we were on our way. It was an hour of time that instead of being upset, I was grateful to have that time with Ethan, just the

Fridays I am scheduled to go into work a few hours later than normal. Today I had to be there at 8. This allowed me to have my coffee with Avery and find out all the stuff she has been up, what her thoughts are and what she is thinking about. I really enjoy it. This morning she was thinking about names to suggest to her teacher for his baby daughter. Her teacher just found out his wife is having a baby girl. We were spitting out cute names as well as hideous names and just being silly. I love these moments. After work I had to go to a podiatrist appointment. This is a sure sign of aging. No one ever sounds cool when they have to decline an invitation because they need to go to the podiatrist. I walked away with this super cool bunion sling that I am supposed to wear at night. I mean, how lucky is Paul? I could really make this marriage last another 23 years if I parade around in nothing but my bunion sling. What a lucky guy. Ethan has been successfully doing his full time college and P

I am so glad tomorrow is Friday. This week has been tiring. I need to catch up on some serious paperwork this weekend.  Today was uneventful. Avery and I watched a movie together for her English class. It was one of those movies that you had to pay attention to…so I kept asking her what was going on. I am the worst movie partner.

I contacted our transplant coordinator. I asked if she could give our donor family my email address. One of the things our donor family requested was pictures. It would be way easier to exchange pictures via email. So we are working on that. Ethan had an endocrine/ neurology appointment.  He was the youngest patient by about 60 years. This appointment was to discuss the mass/cyst in Ethan’s brain. We are transferring Ethan’s neurology/endocrine case management from NYC to Rochester. We are also going from Pediactric to adult with this management on the recommendation of NYC endocrinology. They aren’t overly concerned about it. Ethan had to have extra lab work drawn and then we need to schedule a brain MRI. Of course I wanted to know if they planned on using contrast because Ethan’s kidney values are slightly high still and contrast is nephro (kidney) toxic. They want to err on the side of caution and will consult the kidney transplant team. I told them if they used contrast they were g

As a HUGE Office fan, I am excited to announce my most prized accomplishment to date.  I am officially on “The Party Planning Committee” at my work. This given me joy all day long. I am one of two members. My co-partner and I are going to struggle being mature about our party planning ideas (somehow we will manage to get it together). Being back to work is actually good for me. It gets me out of the strictly Ethan’s medical mindset. We are quietly tip toeing away from the overly medical life, towards the border of normalcy. Ethan wanted a copy of the letter from his donor family. This warmed my heart. He expressed that he wants to know more about Colie. He wants to honor her. He mentioned he had an overwhelming sense that his donor was a woman. The donor family is receptive to communicating which is great. We would love to keep them in the loop. Without Colie, there would be no Ethan.  Today felt good. I felt like a real and normal person, doing real and normal things. Happy Birthday L