Ethan’s Journey

I got an email today that we should be expecting a letter from Ethan’s donor family. I got sick to my stomach for how difficult it must have been for this family to write. I had anticipation butterflies in my stomach. I am curious about our donor but also can’t imagine the loss they experienced. We had been warned that we may never hear from our donors family. I reached out anyway. I do t really know what I expected but I asked the donor family for a name and some characteristics of our generous donor. I waited until we were all home and sitting together and I read the letter out loud. It was written by our donor’s mom. She shared that our donor’s name is Nicole (her friends called her Cole or Colie). “I KNEW it was a girl! I totally KNEW it.” He said. Colie was a nurse that was ambitious, adventurous, loved animals and loved being outside. I really felt that Ethan was the perfect vehicle to help her continue to live on, and they, as a team, can conquer the world together. Ethan let th

Avery had her RIT campus tour today. She really liked it. It is fun to hear about all the different changes the college campus life since I was in college. I actually want to just live on campus and just not take any classes. Ha ha. It was nice to have a day to leisurely just enjoy. I napped this afternoon (because I stayed up way too late last night). We had dinner with my mom and Gene. It was fun. Paul was away all day snowmobiling. I feel ready to take on a new week. My back behaved itself today. I was thinking about how many hours I have actually gotten back just not having to do dialysis. It is wonderful.

Weekends. The most coveted part of the week. Today was spent getting some chores done. But it was also spent with family. It was spent being thankful for those being present in our lives.  Paul and I went on a date to listen to jazz music and have dinner. We went with some friends. Dinner was great. Music was great. Anything beats being immersed in medical drama. I am looking forward to spending time with those that matter most this year. I want to see some of the world n person. I want to spend time with friends. I am so thankful for the things and people we have. Ethan went to the lab this morning. I think his lab work looks pretty good, even though it isn’t all completely normal. We are close.  Ethan seems happy to be out of the house and back with his friends at work. All in all….it was a great day!

Today, Everyone was at work in our house. I felt bad for the dogs but this is actually a bright spot. Everyone is feeling well enough to work. I unfortunately received several phone calls I wasn’t able to answer. I have made a list to try to tackle next week. Monday I meet with the chiropractor during lunch so that day is out. Hopefully Wednesday…. My day off…..I will keep adding to the list for Wednesday.I have 3 appointments scheduled for Wednesday as well. I left work and went out to eat with a friend. It was so nice to see her. She offered some thoughtful ways to approach Ethan when he is a rouge teen. This new life totally beats dialysis! Avery, Paul and I watched a show together, Ethan was in his room playing a racing game. We don’t have to plan the next 4 hour session. I don’t have to prepare solution. Wow!

First day back to work. I spent the day in surgery which was great. It was a boring day. Boring is good and is similar to a relaxing day. My back is still a bit sore but I am keeping up my stretches and chiropractor appointments. I got to spend my lunch with a friend as well as the kids. It was wonderful. I am so glad I work so close to home. Total bright spot. I am going to try to keep my momentum up. 

Back to work tomorrow. Today was filled with trying to tie up loose ends and set myself up for success. I think I can juggle stuff if I can be efficient. Today we got 6 bills in the mail. 3 bills from collections, 3 bills from Columbia. All of them I have to forward on to the insurance person to settle with both Columbia and the collections agency. I got another letter from the prescription program saying another one of Ethan’s medications is being denied because we didn’t get prior authorization. It was the drug he needed urgently  to reduce Ethan’s potassium. I took pictures of the letter. Unfortunately, I didn’t notice the object that cast a shadow. I scribbled out the letter and personal details just to share the shadow. It was so bad I included in my email that I noticed the shadow looked “inappropriate” and assured them it was a wine bottle.  Tomorrow will be a long day back. I hope my disc survives.  Happy birthday Nana

Today was Avery and I day. I have missed a lot of time with my Minnie me over the past couple years. This kid is a delight. She is funny and smart and also can laugh at herself. She is thoughtful and empathetic. Her presence just offers a sense of calm. We tease each other A LOT! Today Avery drove on 390. We learned I have to be a better communicator, which seems to be a theme in our house. Avery did well changing lanes and looking in her blind spot.  We did some thrifting and I took her to lunch. We even ordered dessert. Ethan and his buddy went to pick up a transmission for his car. He was excited because he got it for a great deal. It was good socializing for him to make this deal, organize a ride (Paul had his vehicle) and make a transaction. Ethan is working again tomorrow. He likes feeling more normal. The weather was not great today. It was rainy and damp. Ugh! Glad our fire place was cranking.

I forgot to blog yesterday. Oops.  Today I took Avery for a tour of the University of Rochester campus. She is looking into their physics program. We go to another local college on Sunday. She is going to be an expensive kid. Avery helped me clean our den today. Our den has our fire place and Theo, the rabbit. Theo gets his fur all over everything. The fireplace makes the room really dusty.  I looked at the stones of our fireplace. It is the first time I have really looked at them in two years. Wow! The cobwebs were having a family reunion. I vacuumed the ceiling, the baseboards, under all the furniture. I thought about how grateful I was to have time to clean the cobwebs. Noticing the cobwebs was a step in the right direction. No one will ever remember how many cobwebs were in our house today. We won’t be known as the house with ALL the cobwebs. The fact that we are able to live at home and notice the cobwebs is the real win for today.after all, they have been there for quite some tim

Ethan went to the lab this morning for more bloodwork. I got the results but we don’t talk to the doctor until Wednesday. I sent her an email so we could talk about some things before then. His creatinine went up a little again. Ugh! Otherwise, time with my Sarah has been a gift!

 Today was calm. One day in a row. Ethan goes for lab work tomorrow. I snuck away for the weekend with my Sarah. We are having a girl’s weekend.  It feels weird and exciting that I am able to spend time with friends. I feel like I am letting something slip somewhere, because I am have the time to do so. I am glad to have several hours a week back.

This morning I woke up 2 days behind on paperwork. We received a notice in the mail from insurance stating our NYC hematology appointment from 6/21 would not be covered because it was out of network. A grievance level 1 had already been filed and denied. We are one to a grievance level 2. The insurance company wants the pediatrician’s office in Rochester to be involved because Ethan is under their care. Now Ethan’s pediatrician’s office referred us to Strong cardiology, which referred us to Pittsburgh for transplant because it was closer. Insurance told us we had to go to NYC for transplant because we had to stay in the state. This is the same insurance that then denied us coverage in NYC a few weeks later stating we were out of network in NYC even though that is literally where they told us to go. The transplant team is the end all, be all, mighty rulers of Ethan’s medical care for the next couple of years. his transplant team sent him to this particular hematologist, because they nee

Our ride to the hospital via Uber driver was quite an adventure. I allowed 45 minutes for the 3 mile drive from NJ to the children’s hospital. Usually that is about how long it takes due to traffic. I can’t imagine that nightmare daily. Our driver picked us up and couldn’t figure out how to work the Uber driver app. He used broken English to explain he couldn’t get our address to pop up of where we were going. He kept asking me to call Uber to let them know he had picked us up. The only number (which I explained to him) was his number. He told me to call it. His phone started ringing and he was surprised. It was me. Because he told me to call him. 😳 This is an older gentleman, mid 70’s. His arthritic fingers gripped the steering wheel as he drove. It was clear right off the bat that it wasn’t going to go well. For some reason, I couldn’t be mad at him because he was out there working. He did a lot of heavy sighing and kept blaming the app because the phone “signal wasn’t good”. Howeve

 We made it to New Jersey by around 4:30, which was good. It was sunny and dry the entire way and the drive seemed to go quick. Once Ethan arrived, he had to call the insurance company and report the claim on the jeep. Luckily, the insurance company was helpful and we can move past the accident.  We then prepared to go to dinner with some special people. Prior to leaving, I skipped on down to the starbucks to pick up some sugar cookie syrup for Kristen. They didn’t have it available for purchase. I am sorry Kristen, I tried. 😢 We made our way to the restaurant, as we crossed the George Washington Bridge. The skyline was lit up with the buildings twinkling and standing tall and confident. We got to see and visit with a few of our 9 Tower friends and hear about how things have changed. Also, I like Ethan’s nurses to see how far he has come. Many of them have left 9Tower but I love that they have a special place in their heart for us during the hardest and traumatic time of our lives. We

As a parent, we get excited about firsts. First steps, first words, first job. Well…..Ethan got into his first car accident. Not really a first you want to celebrate. He is ok, just a little smashed in the back. This is why we have our young drivers driving 20 year old vehicles. If these things happen, it isn’t as much of a loss. The keep is still driveable. Ethan is fine. No injuries in the accident. Yeah! He called the police and went through all the necessary steps of  reporting an accident.  We are preparing to leave tomorrow as soon as Ethan’s class is over with. We will drive to Fort Lee, NJ and then we are meeting up with some friends for dinner. Paul went out snowmobiling this evening for a little bit. I still am working through my back issues and trying to not get frustrated about not being able to go. My back is not looking forward to sitting in the car for 6 hours tomorrow.

Ethan spent the day tinkering with his car. He is trying to do something with it that has been one disaster after another. Frustrating but great experience. I visited with my mom and Gene for coffee. Brian and Kristen had a short visit from Buffalo to bring some special yummy Buffalo donuts. Paul and I went to a friend’s house to watch the super bowl. It was so good to converse and visit with people again. Paul said his favorite part of the night was watching me have fun. I agree….that was my favorite part too. It is so weird to be able to have the time to enjoy things. The halftime show for the Super Bowl was fantastic. I totally enjoyed all of the performers. It was so nostalgic to hear songs that were from years ago. Loved it. Even if you didn’t like it, we can agree to disagree. I compare life now to life a year ago. I watched a video I took 1 year ago and am thankful we are past all that. Cheers to smiling, laughing, friends and family. Also…..I bought my first bag of JELLYBEANS!

We received such a beautiful gift today. It is a wreath. Bright red and sparkly. It is for heart awareness month and I will probably have it up more than one month. Thank you Ruthie. We did normal Saturday chores today. We went to Lowe’s and Walmart (Paul, Ethan and I) while Avery worked. Ethan spent the majority of his day in the garage working on his car. This is good to see because it means that he is mentally stimulated and it brings him joy.  Paul and I played cards with friends. It was a low key day which makes it a bright spot.

I still have not received my Paid Family Leave payment, so I called to check on the status.  Me: Hi, I am calling to find out the status of my Paid Family Leave check, It was approved on January 28 th and I still have not received the check. Lady: It takes 7-10 business days to receive it. Me: …… Me: It’s been 12 days. Lady: it was issued on February 8 th. Me: So it is 7-10 business days to ISSUE the check? I though it was 7-10 days for me to receive it from the time I was approved. Lady: It is BUSINESS days. Mon-Fri only. It does not include weekends or holidays. Me: Was there a holiday? Lady: Yes Me: …..(couldn’t figure out what holiday but assumed it was something I was ignorant about) Lady: what is the purpose for your call? Me: …..(am I in the twilight zone????) To find out the status of my paid family leave. Lady: well you should have already received the first check. Me: (I KNOW!!!!! That is why I am freaking calling) I have not received any checks. Lady: well give it a few days

Today was good. I finally called a chiropractor for my back as well as the spine center. So looking forward to that feeling better. Ethan seems to be working on trying to be more talkative and helpful around the house so that is also a bonus.  We had his nephrology appointment this evening. His doctor is pleased at what his creatinine is almost back to normal. We will be going to NYC next Tuesday for his appointment on Wednesday. He has to start taking vitamin D again as well as his anti viral. Hopefully it doesn’t cause morphological changes on his bloodwork. His doctor is pleased with his progress. I spent some time in Avery’s room. She likes to have company while trying to do her homework. She sometimes asks for help, but I don’t excel at that type of stuff. I jokingly will come up with an answer that is so far fetched. I then tell her to convince her teacher that my answer is correct. I mostly rested my back today. It would be nice if I could take an NSAID, but I chose to trade in

Ethan got his weekly labs done this morning. We are at about a 45 minute wait each Wednesday with the staff shortage. I thought the labs looked alright compared to last week with a few small issues. We meet either the nephrologist on zoom tomorrow. Ethan didn’t have class today so he kept himself busy doing stuff around the house. He helped bring wood in, keep the fire going and unload the dishwasher, which are steps toward our goals of having him contribute more to the household. Tomorrow he is back to school. My big plans include picking up dog poop and filling bird feeders. Don’t be jealous of my fancy lifestyle. This evening we got to meet up with some friends and had a nice evening. Friends just make the world a better place.

Time helps sort things out. Our family has been a little bit of a disaster. Ethan opened up to me a little this morning but we had to cut it short and it was never resolved. Tomorrow is my day with him. He has his lab work in the morning.  I met with my counselor. We discussed social maturity and ways to help Ethan practice his social skills.  When I talked to Ethan about trying to work on his social skills he was perceptive to the idea. He did say he has realized that and is going to actively try to work on it. She also was saying that men tend to manifest their emotions differently than women. But mostly I am talking to her to see how I can improve my communication skills and how it relates to mediating family situations since Ethan is not willing to go to counseling. My goals are to label emotions that may present themselves and try to take a step back and see where they are coming from. A place of fear? Anxiety? Depression? It seems so silly. But I am going to do it because I am ho

I ran some errands today. After arriving home in the late afternoon, I walk into the house and hear Ethan and Paul arguing. Most of it a cultivation from Ethan’s refusal to get help. Ethan’s anger, PTSD/ depression has been trickling down on the rest of us.  Ethan’s mood has surfaced in many unfavorable ways. He is able to be completely normal with his friends, but miserable with his family. He is isolating in his bedroom. We are all frustrated.  At least Paul was getting it off his chest and trying to figure out a way we can all work on coping to get through this. We will get through it. This too shall pass.

Today was frustrating. Last I have started to go to a counselor to learn how to cope with a teenager that needs therapy but is unwilling to help himself. Everyday is a new adventure. You never know what you are going to get. The angry kid that is mad with his situation? The fearful kid that is scared something bad is going to happen? The seemingly happy kid that remains happy unless things don’t go exactly his way? Today I was told I was selfish. I was selfish for asking him if  he had sent a thank you text to acknowledge a birthday gift. I was selfish because I told him he was raised better than to disregard a birthday gift and that it reflects poorly on me as a parent. Very, very selfish! It is times like this I would like to remind him why we are not doing dialysis anymore. This would only cause him to resent it and I don’t want that either. How much of it is being a teen and how much of it is lack of therapy. I told him I was not going to ask that question anymore. If he does not t

We got a letter in the mail that one of Ethan’s rejection medications is no longer covered by insurance. Are you kidding me? I reached out to Ethan’s transplant team to see if they could do a peer to peer and warn them that we may need to go to plan B (which is switch to a different medication). Even on a Saturday, I got a response right away. Ethan’s doctor is so awesome. I swear she is so responsive. She said they would look into it on Monday. It’s always something! It has been covered for over a year. All of the sudden it is a problem. Things were not very exciting today but I got a lot accomplished. Collected paperwork for taxes, applied for fafsa for Ethan, filed paperwork, went through emails.  My bright spot was the whole sunny day. 

Happiest birthday to my first born. He’s a fighter. His first gift today was a snow day from his college. Woo hoo! His overall gift was NO BIOPSY!!!!!!! He even said that he is getting restored hope that 2022 is going to be a better year. He looks better and feels better.  We didn’t  have anything really planned for today. We made our own pizza’s for dinner. I even made stuffed crust. We have lots of Ethan’s favorite snacks. He is having some friends over this weekend. The snow is amazing, there is just to much of it. Ethan plowed with the 4 wheeler. The winch broke, so he had to make due with not being able to move the plow up and down. He just had it down and moved the snow. Avery and I made sure the side walk was shoveled. Phineas played out in the snow too. Ethan had his best friend, Ryan over and Ryan shared the brownies and ice cream we had. Ethan didn’t want us to sing, which Avery and I wouldn’t accept because our naturally beautiful (not really) non-harmonizing opera style voi

We met with the nephrologist today via zoom. It was quite interesting as Penny was trying to bite Ferguson in his man parts. They were both on my lap the entire time and it was quite embarrassing. As soon as the zoom was over, penny curled up and went to sleep.figures. The nephrologist couldn’t explain Ethan’s bloodwork. Her best guess is that Ethan is having issues with his potassium now is because when he was on dialysis, that is what kept it in check. He has had his potassium spike two times. She also wasn’t sure why his creatinine went so high. She guessed that maybe Ethan was dehydrated but she couldn’t really say and that wouldn’t explain the potassium. Ethan is an anomaly.  Either way Ethan stepped in shit and is coming out smelling like a rose. Typical Ethan. Stumping the doctors…AGAIN. But his doctor was clear, he is NOT in rejection. Sigh.of.relief. We got lots and lots of snow. Ethan have Lowe’s the driveway for us. Avery is having a snow day tomorrow….cross your fingers tha

I heard the the groundhog recently died…just before groundhogs day. That can’t be a good omen for human kind. Big news today. We went to go get Ethan’s labs done this morning. The lab was quite busy. You can learn a lot about people when observing them wait. Mostly people understood that there is a crisis within our healthcare system. They waited patiently until their turn. There were a select few that tried to get themselves to the front of the line and that crabbed at the ladies at the desk. We accepted our date and waited patiently. We t paid off. We got our results and found that Ethan’s numbers are going back to normal. They are still elevated a little but his potassium is normal. His doctor cancelled the biopsy for Monday. We meet with her tomorrow via zoom. We will still likely go mid week for him s check up but at least it will be fairly simple. I still have to cancel the hotel that I just booked…and the covid test I scheduled ….AGAIN for both things. I am glad to do it if it m

I woke up feeling much better than yesterday. MUCH better. I made some progress on rescheduling Ethan’s appointment for next week. I spoke with the transplant team to get the orders for tomorrow’s repeat lab work. I was able to reschedule the covid test required. Tomorrow I go to get my covid booster. I have my electrolyte drinks ready to help me so I don’t feel ill from it. A high school friend of mine passed away last night /this morning. This is especially hard news as I had spoken with her recently about how she was feeling better after a procedure she had. She has two sons that she leaves behind. I said to a friend of mine that now is the time to really grab life by the horns and don’t hesitate to do the things you love with the people you love. I was able to rebook my hotel and reschedule my trip online through Medicaid travel. What a pain in the neck all of this is. This storm better be spectacular for all the extra work. Now on to what’s on everyone’s mind….will there be a shad