Ethan’s Journey

We heard back from the doctor over the weekend.  The plan is for Ethan and I to move to NYC the week of November 9th.  Ethan will have to be admitted to the hospital for 3-5 days and get a pic line to start IV medication that will help by widening the blood vessels and lowering the blood pressure so that it allows blood to move easier in his body.  The doctor feels at this point he needs this medication.  Once he gets his pic line and this medication started he will officially be listed on the transplant list at stage 1b.  This isn't the most urgent or the least urgent.  It is a listing right in the middle. Obviously there isn't a magic crystal ball we can look at to predict how long we will be there.  On average we will wait 4-6 weeks.  Then spend 2-3 weeks in the hospital after transplant and then spend at least a 4-6 weeks  after so that he can get his bi-weekly heart biopsies done to monitor for rejection. Three months after transplant, he and we will need to remain in a &q

  We made it to New York City. It was a realatively easy drive until the last 15 minutes.  The last 15 minutes would make anyone want a stiff drink. Our room is on the 11 th floor.  It is small, but nice. This is the view from our room. Ethan made traveling look cool.  We stopped in Scranton, PA and looked for our friends that work at Dunder Mifflin, but we didn’t see any. It is so cramped here. It is just a different way of life than we are used to. Very busy, loud and full of smells.  Some good, some not so good. While Ethan got on his computer when we arrived, Paul was googling liquor stores. Ethan is nervous and cranky because of his upcoming appointments. I can’t imagine his worry. Tomorrow will be a busy day. 10/21/20 The hotel room was the smallest hotel room ever seen.  It was about 12 ft by 12 ft. We had a small bathroom, queen bed and we brought an aerobed that didn’t really fit between the bed and the wall unless it wasn’t blown up all the way. We all slept crappy. Ethan dev

 Paul rearranged his schedule next week.  He is now able to go to NYC with us. Not only will I enjoy having him there, but I am also glad he can do the driving. PHEW! Between the 3 of us, we will be able to take our country butts to the big city. What a relief.

  We got an appointment next week for Ethan.  Paul is not sure he can go with us because there was only one day with one time slot available for an echocardiogram. That day is a day that Paul already has students scheduled for a class.  It is a class that has been rescheduled and pushed off until it Paul teaches it next week, due to Covid. I took the appointment anyway. I booked the hotel and am now planning the journey to NYC with just Ethan. He is going to have to help me so that I don’t run anyone over. I am a little nervous to drive in the city.  Actually, I am a LOT nervous. I have been researching where to park and my plan is to park the van so I don’t need to use it again until we leave.  If Paul can’t rearrange his already scheduled class, I have mentally prepared that I can do this. With Ethan’s help, and GPS, we can get this show on the road.  Get out of our way.....

  Ethan had his hematology appointment last week. That went really well. His hematologist works closely with his cardiologist, so they have plans to repeat some of Ethan's bloodwork to make sure things look good but she said she was not concerned with any of the results. I spent some time last week trying to trace down what the hold up was with the insurance.  I left several messages, explained what was happening to several people and got transferred several times.  It is so convenient when working a full time and part time job. (SARCASM!)  I spent another bit of time yesterday trying to somehow get to the bottom of what the hold up was.....and finally got an answer of who to contact. Ahhhhhh....found the desk our paper work was sitting on. The problem was, I couldn't contact that person directly.   Since a transplant requires you to have a team of people to help, I left a message with one of the coordinators yesterday afternoon.  I was disappointed but not discouraged, when we

 Ethan has been holding steady this week.  He has had an incredibly sore mouth and throat.  He has gained 2 pounds (water weight) since being home from the hospital.  He has been resting.  Yesterday he decided that he felt well enough to go to Race Warz and do some filming.  He said the distraction was nice because he didn't feel to bad the whole day. I did hear from Ethan's cardiologist. He and Ethan's regular doctor decided that it is best for us to keep the hematology appointment next week.  Ethan was not thrilled with this because he always thinks there is a chance they will hospitalize him on the spot.   I worked a lot this week to make up for lost time spent at the hospital earlier in the week.  This will help for when I qualify for Paid Family Leave (which I will qualify after all of the delays we have had).  This is another one of life's hidden gifts. The delays have had actually worked in our favor, even though they were incredibly frustrating. We kept hitting