Ethan’s Journey

Well…so far I am not impressed. Last night We had to fight for answers and didn’t have a clear answer until 10:30 pm. We still didn’t know what the surgical morning would look like. Together? Or separate? The answer is Ethan and I were split up in the morning. I went to the adult hospital. Paul stayed with Ethan at the children’s hospital. A tornado of fear plowed through our room. Paul got a front row seat to the degree of miscommunication that happens. It’s like trying to herd cats. It’s no ones fault really. That is why it is so important to have an advocate. I was disappointed that we were told we could wait together….but I was trekking alone to the adult hospital to wait. Good thing I am an introvert. I didn’t mind it. It would have been nice to give us a heads up on that one though. Paul had explicit instructions and I told him to call me and put me on speaker phone with the anesthesiologist for Ethan. I think the degree of separation is going to be the hardest. It could also be ...

Night one in the apartment. WAY QUIETER than the last apartment. It is also dark because it is a “garden” apartment. It doesn’t have a lot of natural light and is hard to gauge time when the curtains are closed. It was funny to see Ethan reacting to the clicking and rattling of the heating system. Paul and I took a walk this morning all around the surrounding city blocks, just to check out the area. The sun was out and warming us up. We found a little park near by that was cute. We waited and waited and waited for our call to be admitted so Ethan could have dialysis. I reached out around 1 pm and was told all the rooms in the hospital are full and they are waiting for patients to be discharged so Ethan could have a bed.  Finally around 4:00 we got the call. I reached out to the kidney transplant coordinator to make sure dialysis was still happening. Paul, Ethan and I headed over to the hospital.  We still aren’t sure where we go and when in the morning. We spewed all of our qu...

We made it to NYC! One step closer. Got up this morning, I programmed the coffee maker so there was a fresh pot brewed that made our whole house smell divine. It’s part of my coffee experience. I hooked Ethan up to dialysis in mostly the dark. He slept through it and we were done before 9 am, way ahead of schedule. Ethan did not pack his clothes like I told him to a bizillion times yesterday. 😩 where is this kid from? He gets this from Paul. My stuff has been packed and repacked a few times.  I completed my last dialysis session. WOO HOO!!!!!! I came. I saw and I conquered. I am not going to miss that time suck. We left around 10 am. Our neighbors were cute and waved at us as we left. We stopped to grab a bite to eat at Panera. Paul was not loving the wait for the food. We finally got our food. Paul set his sandwich in the “to-go” box in the car on the center console. He backed out of the parking spot and when we merged onto the expressway, his sandwich fell out of it’s container ...

 I wish we lived closer to NYC. When I have surgical patients, sometimes they go home with an e-collar to prevent the animal from licking the surgical site. I think it would be fun to show up to the surgery Tuesday morning with an e-collar and explicit instructions that the nurse is to apply it before I get my breathing tube out, to prevent me from licking my incision. I imagine it would be more funny the more serious I say it. Follow me for more ways to punk your nurse. Paul was so cute. He busted his ass putting up Christmas lights today so that Ethan and I could see them before we left. Ethan and I walked outside, taking in the magic and thoughtfulness of the dancing light show. We missed it last year. Our neighbors had an equally dazzling display. Ethan is making me sweat as he is not all packed. We did shimmy in time for me to cut his hair this evening. We talked about how nice it will be for him to take a shower and wash his own hair. He has not had a shower since November 11...

One more dialysis treatment for me to give on Ethan. He has two dialysis treatments left before his new kidney settles into it’s new home. He better show it a darn good time. We are mostly packed and ready. We have a few last minute items that will go in the bags on Sunday. I feel ready and relaxed. “Gotta kick ass”. We are ready. Ethan is planning for next summer. He is anxious to be able to actually have the stamina to work. He is anxious to make a wage to afford his racing habit.  Ethan racing doesn’t scare me. He has always been cautious. He will have fun doing it and that is the best case I can hope for.  He also knows he has to finish school to get his piece of paper (and some knowledge) to support his racing habit. I am interested in how quickly he will recover and start putting weight on. Will he feel better and just continue eating like a rock star? Will we be able to afford his appetite? Ha ha. Maybe he will be able to discontinue his appetite stimulant medication. H...

 Thanksgiving is a pleasant holiday for us. Our family is fun. We laugh a lot. There are some inappropriate comments made that are just hysterical. The food is always amazing and there is NEVER a shortage.  We have our traditions. Paul fries a Turkey. We all eat it and say how delicious it is. We also have a lot to be thankful for. Every situation has a bright side. Ethan and our family had some tough times and we also met some amazing people that have now become our extended family whether they like it or not. Ha ha. At the dinner table Avery announced that if she ate anymore, her “stomach would explode”. It was quiet for a moment as we all felt the same. Then Papa said “that would be a mess!”. It struck me as funny that he thought of it in a literal way. Avery had everyone complete her psychology experiment. Brilliant on her part to get so many people at one time. Ethan was quite quiet this evening and a bit grumpy.  It wasn’t until the end of the evening he opened up a...

 We were gifted a lovely dinner, catered by Wegman’s, from the Willie Bee Foundation. We shared it with family we may not have gotten to see otherwise prior to our departure. This foundation has been absolutely wonderful to us, which has helped immensely during such stressful times. Our meal was glorious and plentiful. We had enough left over to freeze a few meals for Avery and Paul while we are gone. Today was full of errands. I have been trying to tie up loose ends with work stuff as well as financial and medical paperwork. I have accepted that some things are not going to be done. Several people from 9 Tower have reached out to us. It is always fun to hear from them. We are thankful for them. As we head into thanksgiving, I want to give my thanks to all of our family and friends that we have knit into our safety blanket. Each one is as important as the next. If one strand comes loose, the blanket is in danger of unraveling. Our blanket has stayed strong. Thank you to all that ar...

We all should be thankful, especially this week. I may have been especially saucey today. I played a few fun tricks on some co-workers. I like to play harmless pranks. Pranks serve two purposes.  One is the entertainment I get from imagining how the joke will be received. The other is, the prank actually unfolding and then I am rewarded with sharing a smile. Sharing smiles spreads joy and we all can benefit from it. Ethan and I wrapped up our final zoom calls (the ones they wanted us to do in person) over the lunch hour.  We now have sone consents to fill out and return.  We have been told a few different versions of how Tuesday morning is going to unfold and what to expect.  After the third version today, I asked for clarification. We were left with we may or may not be in the same hospital for the surgery. We may or may not be able to be with each other before surgery. We may or may not be in the same hospital to have the surgery done. In one version we are across ...

One year ago today, Ethan took us on a rollercoaster ride full of surprises. I didn’t really care for that ride. I am hoping the next ride we embark on is more similar to a lazy river on a hot day, with a margarita. His transformation has been un-imaginable at best. From almost every machine keeping him alive to working on his project cars. As parents we second guess ourselves all the time. One of my sources of anxiety for Ethan, is not being able to provide the psychological support that he needs. I think, Somehow, we will screw him up without the proper therapy. Ethan has said time and time again, he does not want therapy. But the struggle lies in that I KNOW he would benefit from it. We had a zoom meeting with Ethan’s psychologist. He was a good sport even thought he didn’t care for it.  He has worked through the fear and now is to the point where he just wants it over with. He is planning for the future which is great. Let’s get this show on the road. Ethan has a race car to bu...

Today was spent as a fun day. Paul, the kids and I spent time with family and friends. We had many laughs. I did no work and it was amazing. It is what I imagine weekends will be like in the future. The food was delicious. I think I am stretching my stomach for Thanksgiving. ❤️ A year ago today, Ethan was being wheeled away to get his new heart. Another family was stricken with unimaginable grief. I can’t imagine this year has been easy for them. I have our letter to them written. I am waiting to send it until after the kidney transplant. Ethan hung out with his friends for most of the day. I know he needed that. It will put him in a much better head space for next week.  I am looking forward to spending some time with my sweet Avery this week. She makes me so proud. She has really had to mature a lot in the past year. She has totally grown as a person.  As the evening winds down, I am cuddling with Penny. Oh, my dumb little Penny. She is happy and friendly…but what a dunce. A...

Thank you for all the thoughts and well wishes for Ethan, my family and myself. We truly appreciate them. This weekend was full of wrapping things up. I am doing adult things like rolling over a 401k for work due to a corporate purchase, bathing the dogs, picking up sticks for kindling for Paul and Avery while we are away, laundry and packing. Most importantly, staying away from a lot of people (and covid) to avoid screwing things up for our surgery. Tomorrow we are doing a birthday celebration for my mom and Gene as their birthdays will be when we are away. I finished up my list of important Ethan information, for when I am under the influence of an anesthetic and pain killer induced slumber. I also did some reading on how to alleviate gas pain after laparoscopic surgery. Knowledge is power. As always, medical procedures, surgeries and situations really bring out the “gross” in people. Can’t wait to be the “gross” patient (*sarcasm). I prefer to keep my gross to myself. I am a dog at ...

  This is what anemia looks like in an 18 year old. Passed out sleeping in the middle of the day. He goes to bed at 9 and wakes up at 6:30. I had to wake him up for our nephrology appointment. 5 more dialysis treatments. But who is counting? 1 year ago today, Ethan was listed as status 1 A. We had no idea what kind of storm was waiting for us. We weathered the storm. I mentioned it to Ethan. We talked about how awful his year has been. I reminded Ethan that it was a better year than it could have been (for me selfishly). He was not convinced with my assessment. As each day passes, I can tell he is getting more and more stressed. In his mind, the grains of sand passing through the hourglass are becoming scarce. This weekend we will work on packing. Ethan doesn’t feel much like talking about the transplant. It stresses him out.  Each day is one step closer.

Today Ethan was still feeling a bit tired but his spirits were better. I stopped in at lunch and brought Beamer with me. That lizard sure does like his car rides. Ethan enjoyed his time with the lizard. It was his bright spot today. I am so tired. Tomorrow is dialysis.

I heard back immediately from Ethan’s NYC nephrologist this morning. She is not pleased with Ethan’s CBC either. I had emailed her to keep her in the loop regarding his results. I understand she has many patients, but mine is the most important to me. So I just scooted him to the front of the line with an email for her to review his results. Now we need to repeat labs next week locally. Whatever it takes to get him in the best shape for surgery.  I am finding it stressful that I am going to be at the mercy of others. I have been the CEO of Ethan’s medical information and I am afraid something might be missed. I found a little more information out about the Medicaid travel program. I learned that our social worker at the NYC hospital referred us to our social worker at our dialysis center. I contacted her, which actually was our insurance coordinator because I can’t keep everyone straight. She referred me to our new social worker because our other one left. I found a number after di...

My butt hurts. Sitting in the car for so long to get home and then sitting through dialysis. Ouch! I am not designed to be sedentary like this. I am a mover and a shaker. Ethan is now voicing and venting his frustrations. I am glad he isn’t keeping it in. He is terrified. He is angry. He is mad that he is transitioning into an adult all while dealing with the stress of his medical conditions. He feels left behind by his peers as they venture on and have jobs. There really isn’t much I can do besides listen.  I know this will get better as things improve after surgery. Once he gets his energy back. Once he gets his time back. Then he can start getting his life back. However, I have a vision of how things will go and I know there is a small chance it will go exactly how I envision it. We will just weather the storm. I am hoping to enlist the psych team’s help once we are there and there isn’t anywhere he can run and hide???  Ethan had some abnormalities on some of his bloodwork....

Woke up this morning and happily skipped to the shower. Showering is like a nice friendly hug first thing in the morning. It eases the sleep out of your body. I turned on the faucet to warm things up. I don’t like the floor to be cold on my bare feet. Things didn’t warm up. I am standing there nude, and it’s as cold as death. 🤬. I then went through the motions of asking myself if I screwed it up. It seems pretty straight forward, but who knows. I then went through the motions of maybe the hot and cold knobs are mixed up. Nope. Maybe I turned the knob too far or not far enough. Nope. I checked the sink. No hot water there either. I proceeded to wash up and wash my hair in the sink with cold water. I can’t be showing up at our appointments filthy. I had coffee to make my anger go away. Ethan and I went down to wait for our Uber. I mentioned to the front desk that we had no hot water. The desk attendant didn’t apologize just said he would “send someone up” to look at it. I will readdress...

As the days get closer, this is feeling more real. I am not worried about the surgery for Ethan or myself. We haves skilled and capable surgeons and nursing staff. I am more worried about catching something/covid and having to postpone the surgery (which will be devastating). I am worried about Ethan getting his medications after surgery. Medication for his seizures or him having a seizure because his dosing will be different after getting a functioning kidney. I am worried he will throw curve balls if they push him too quickly. All of my concerns will be voiced multiple times so everyone knows them.  Ethan is stressed today. He doesn’t like these trips. He puts on a brave face but deep down is circling the anxiety drain. There is nothing I can say or do to help, so we just get through it. We did dialysis and then got on the road. It was an overcast day, which made it feel like the ride was dragging on and on. There are less fall colors on the landscape than there was a month ago....

 Today I didn’t feel totally with it. I was tired. I had a lazy morning, complete with meal prep. I also went shopping for jeans and indulged upon a pair for myself. I took a nap to prepare for a work party.  I was feeling pretty tired anyway so it was well needed.  I went to my work party with Paul. It was “casino night”. We were given fake money to gamble with. I don’t really gamble so I had to watch a few YouTube videos to prepare. Well I now consider myself pretty much a professional and left the table a winner. I am ready for Vegas. I should never gamble because I love the thrill of it, but only with other people’s money. I work to hard to gamble my own away.  We used the chips to cash in for raffle tickets. Then if our number was called we would be able to pick out a prize from the prize table. Most prizes were about $50. It was an exciting and fun night. Paul did great as he didn’t know everyone and was able to socialize even though his wife just sat at the ro...

There has got to be some saying about frustration and how it leads to bigger and better things. I am so frustrated and angry. I really shouldn’t be, but I feel it all the way in my bone marrow. I called the Medicaid office to select a health care provider. This has to be done by the 14 th.  I tried to do it online but when I get to the final step, it won’t accept the choice and it gives me a number to call. So I called. After several minutes on hold I spoke to a live person. I did a small spirit fingers gesture in excitement to be able to cross it off my list only to be denied. The lady told me that they were experiencing a high call volume and someone would call me back. Ugh! If I am busy and I miss the call I have to wait hours for them to slow down to call me back?  What kind of stupid cycle is that? I also tried to get a Medicaid travel application. You are supposed to get one for when you travel. Within the 19 pages of rules and regulations there is no reference to a link...

Today was great. Everyone was home. We had a nice family morning. Paul sat and had coffee with me on the couch.  We both worked on tasks we wanted to accomplish. I am not sure how many times I went up and down the stairs but my feet hurt. I met with my social worker in NYC to go over paperwork I need to fill out and supporting documents. I also met with my transplant organizer and learned the plan of how things are going to go in November 30 th. I tried to do some Medicaid stuff but the office was closed due to Vetran’s day. I am so proud of all the vetrans out there. I thank you all for what you have sacrificed. I finished the dresser I bought and painted for Ethan. It is in his room and packed with clothes.  Today was successful. Forge Ahead. One day closer!

Today I met with my support ladies. They help keep me on track with insurance issues, medical issues etc. they asked thoughtful questions. One of the questions was “do you get flash backs or anxious feelings entering the children’s hospital in NYC?” The answer was no. In fact throughout all of this I haven’t had a true panic attack at all. The monitoring machines at work make me feel tense when they alarm and I can’t silence them. They also taught me about some of the psychological effects of being in ICU from a parent and patient perspective. They were letting me know the this upcoming surgery can trigger some things in the brain for both Ethan and I as we prepare for travel back to the city. All of it is so interesting. I felt empowered with knowledge afterward. Ethan put out his next YouTube video. I think he has been using my blog as a way to process and cope with what he went through. If you want to watch it, here is the link. https://youtu.be/Oan1BbZqBfc I was also able to paint ...

Ethan seems to be navigating through his feelings pretty well. He is working on another YouTube video about his heart surgery and I think it has been therapeutic for him.  Tomorrow is my day off. I have a dresser to paint. I purchased the dresser a couple days ago for $45. It’s old and scuffed but has a sturdy frame (just like me, ha ha).  I have a few shelves to polyurethane too.  I have a 19 page document to read and comprehend regarding Medicaid. That sounds swell. Lots to read. Ugh! Reading. Tonight I made chili in the crockpot. I am letting it cook all night and then Paul can take fresh chili hot off the press, to work. The rest will be meal prep and be stored safely in the freezer in portion control friendly containers. I have a couple zoom meetings tomorrow in preparation for the final countdown to surgery. I am ending my day snuggling with Penny in bed. She is snoring.

Ethan was tired today. More tired than usual. He went late to his co-op because he napped this morning. He did very little at his co-op today, but at least he showed up. There is no fever, but I have noticed in the last week or so his weight has tapered off a smidge. Is his anemia back? Is it a medicine issue? Virus? Did he stay up too late this weekend? Not eating enough protein? Drinking enough water? The possibilities are endless, but don’t want to discount that he still has a direct line to his heart, so we can’t screw around. We have lab work in less than a week, he has no other symptoms. Just tired. 12 more dialysis treatments. But who is counting. Only 48 or so hours left of dialysis time in total. Do you know how much one can do with that time (without dialysis?) I don’t know why dialysis makes me so tired. I am finding that my lack of free time has made me a bit bitter. I can tell that I am just a bit out of sorts and more grumpy than usual.free time is how introverts gain ene...

  Ethan got to hang out with some of his car buddies today.  He thought that was great. I am sure it was a nice distraction too. We head back to NYC on 11/14 - 11/16 for our preop appointments. We need “lots of labs” drawn. As well as going to appointments for a final blessing for surgery. The best part of this trip is, we are NOT going to bring the dialysis machine. Yeah! We officially move back to NYC on 11/28. That is my mom’s birthday. Poor Mema gets her child and grandchild to move away for surgery. Sorry mom 😢. But we are pro’s at this now. Today I spent the afternoon with Avery. She was telling me that she was glad she didn’t have to work today because she wanted to spend time together. What a kid. So I dragged her with me to do errands. We had a nice afternoon. After witnessing a super annoying teenager in one of the stores, I thanked her for being her and NOT being annoying, I totally enjoy her company. That is a bright spot for today and many days.

 One of my very good friends sent this card. It packs an impactful saying. We have certainly had our rain. I am so hoping the rain will pass quickly without an Ethan style tornado or hurricane. Either way….I am looking for the rainbow 🌈. Today the only obligations I had were dialysis and doing drop off and pick up for Avery at her work.  I used the rest of the day for productive work like food prep, organizing closets, filing, laundry and packing up the camper for the winter with everything spotless and laundered. Phew.  We have a solid plan for NYC. I feel good about it. I keep adding to Ethan’s “cliff notes” of his medical history to prepare my brother and sister in law as well as Paul for what Ethan needs when, some previous ailments/ conditions that had developed and how to avoid a repeat and then some notes about the nursing staff and how delightful they are. It was nice to have a day home. We ended it by relaxing together as a family in the living room, with the tv...

 Tonight was dinner at Nana and Papa’s house. Avery and I got a lift in the sporty, red supra. It is so retro inside. The interior is grey and black. The seats are quite comfortable and soft to touch. Ethan was happy. It has been a long time since he was acquainted with his red friend. Not only did he feel at peace behind the wheel, but he gained his freedom back. This is a HUGE win. Paul joined us after he was done working. Dinner was great as always. Nana and Papa shared a new recipe with us that was delicious. We visited with Auntie Julie. At the end of the night, Ethan drove home. He was playing with his car a little, giving it some gas here and there, to listen to the low and throaty purr of the engine. 15 more dialysis sessions.

 Another day closer. One less dialysis session to go. This is all great news.  Ethan had a visit from the clinic lizard, Beamer for lunch. Beamer seems to enjoy car rides. Ethan really enjoys Beamer’s company. Tomorrow Ethan is driving the Supra to his class. This makes my heart happy. I am sure he is going to have a “Supra” day (see what I did there?).

 Today went well and was full of reasons why it is important at to have caring people in our lives. Sometimes you need support an sometimes others need support. Receive support when you need it an also give support to others. This is the recipe for great friendships that become family.  While today was full of laughs, twists and turns, the true home base were those that shared laughs, shared concern and love towards one another. Cherish your friends and family. They are the ones that keep you going.

I reached out to the transplant team to see if they can give me tips on how to help Ethan navigate this month emotionally. They recommended him talking to someone…..which he doesn’t want to do. I am trying to set him up with a person to help him transition from pediatrics to adulthood that may sneak in some advice regarding other people that have been in his shoes. We will see how that works.  Ethan really wants to drive his car. Paul and I have been working on our own things like documents, collections years work and getting wood ready for the winter for our wood burning stove. We have a big stack of wood in front of where he keeps his car. We offered him two different vehicles to drive but he ONLY wants to drive his car. He was getting a bit belligerent about he wants to drive HIS car. I know he is being a mix of a teenager and his anxiety is swirling…but it does make my short fuse when I got home, a little shorter. Tomorrow is my day off, but it is our “acquisition day” at work ...

 The countdown continues. We are 1 month away from freedom. Ironically we will not be freed from the confines of NYC for a number of weeks afterward…..details….details…. Let’s not get caught up in those. I worked on formulating a plan to schedule our Covid PCR tests 5 days prior. I still need to booster my covid vaccine as well as get a flu shot. Little details like this keep popping up. We will figure it all out.  I took a few days off of work next week to gather my thoughts, complete several video appointments and just to be able to have a moment to myself before trekking back to NYC for our pre-op appointment on the 14 th. I also plan to get my flu and covid booster so we will see what I accomplish. We checked another dialysis treatment off.