Ethan’s Journey

 Last night was not very restful.  I am very thankful to be home.  The constant alarms going off and bed checks only allowed sleeping periods of 20 minutes at a time. This morning was busy.  During rounds, Ethan’s team of  9, yes 9 people gathered to discuss his case with me.  Each one with their own computer, it was a sight.  It was nice to be included within the team and I was able to mostly follow along. Ethan came back with a positive infection for Epstein Barr Virus 🦠.  This is good because this means if he does get a heart from someone who has had it in the past, his immune system will be more equipped to deal with it.  Apparently it is VERY common and a lot of people have no symptoms at all. His repeat echo showed that while his heart is still failing, he is trudging along. The doctors are taking his Pro-BNP numbers seriously. Pro-BNP is a test that measures peptides made by the heart. Normally only small levels are present in the blo...

  Ethan didn’t have the best weekend physically.  He was very lucky to have it filled with his friends visiting and Jesney all day Sunday.  I spoke with his doctor with an update on Monday with my concerns.  He said the best thing to do is go to the emergency room and then they can see him sooner than his Tuesday’s  (today) cardiology appointment. Of course Ethan wanted to finish his online classes before going to the hospital. Off we went to begin our whirlwind evening at 2:30. We both had bags packed because I knew we would at least spend one night. In the ER, they were fantastic.  Very kind and attentive. Ethan had a male nurse that was the best one he has ever had. This guy nailed his iv catheter.  Lots of blood tests were done.  Covid swab, x-rays, EKG, his cardiologist popped by with a plan. Good news!  Ethan’s heart looked unchanged on Xrays.  His CBC, which is a test that looks at all the different blood cells, looked better. ...

 So after calming down from my explosive anger the other day, I want to thank everyone that has reached out.  We so much appreciate it.  It does help more than you know. This whole process is not for the mentally weak.  This is our story of our journey and our ups and downs.  Tuesday was definitely a crap day. Please keep in  mind that I am juggling this with two jobs, a weird school year for the kids, and may have an outburst here and there.  This is my way to vent so bear with me. It helps me sort out my thoughts. I have made an appointment with Ethan's cardiologist in Rochester for next week.  Ethan's cardiologist said he is going to run an EKG and echo to see where things stand.  This guy is fantastic and I can't say enough good things about him.  We have been texting through "My Chart" daily regarding little bumps in the road Ethan is having. We monitor his weight and heart rate as well as give updated daily issues. Ethan hasn't bee...

I am sad, mad and frustrated.  We hit yet another road block today. Our appointment was CANCELLED in NYC. The reason is because....wait for it...... they are telling me that the insurance is “Out of network”. How can a New York insurance be out of network....... IN NEW YORK?!?!?!? WTF??? Apparently there is insurance in NY for upstate people and insurance in NY for "the city".  Well that is fucking fantastic.  So I guess Pittsburgh being out of network and declining that because NYC was "in network" was a bunch of damn bull$hit. We have already emotionally prepared for Next week. I am not just mad about the insurance portion.  I am mad that I had to cancel our hotel reservations quickly to avoid a cancellation charge. This is after I had already put in the time and effort to make them. I am mad we spent the effort contacting each and every one of Ethan's teachers to make alternative plans for Ethan’s classes he was going to miss.  We now have to go through that ...

Ethan applied for a job over the labor day holiday. While he didn’t get hired for that position, it was discussed that another position, a paid internship, may be available. Ethan set up a meeting on his own. In between classes he drove to The Little Speed Shop to meet with the shop owner.   He was so excited to be hired on as a team member. There was no doubt in my mind that there is nothing else he would rather do.  I am most proud that we worked on his resume together.  He submitted it with a wonderfully written cover letter.   The Little Speed Shop is an auto repair shop and race facility.  They specialize in German cars and focus on top notch customer service.  They also host Cars and Coffee monthly (except through the pandemic) and Ethan has always loved going to those. He is very excited to start.  It was a bright spot in an otherwise sucky week.  He is waiting on details of when he is able to start. He is worried he wont have enough e...

 As much as Ethan hated it, I sent the pictures I took to the doctor Monday afternoon.  I explained what was going on.  I also told them I wasn't overly worried and just didn't want to be an irresponsible parent by not reporting it.  So of course they had me come right in.  Do not pass go.  Do NOT collect $200. I had to leave work right away, I picked Avery up at school (because it is literally across the street and the timing was perfect) and away we went.  Poor Avery waited patiently and I had no idea it was going to take as long as it did. The doctor traced his red mark on his arm with a pen.  We were to report if it went outside that mark.  While there, I mentioned I saw some petechiae on Ethan's neck. Petechia are tiny round brownish-purple spots that form under the skin, may be in a small area due to minor trauma or widespread due to a bleeding disorder.  I thought it was due to Ethan itching at his neck.   As I was showi...

 Ethan had his "healthy kid" check up at his regular doctors office on Thursday.  After talking to the doctor, we agreed that we needed to get Ethan vaccinated prior to his immune system becoming severely taxed with a transplant.  Last year, Ethan had a VERY sore arm for about a week from the meningitis vaccine.  He had to get that boosted, along with the flu and pneumonia vaccine.  3 pokes. Ethan isn't bothered by the pokes themselves.  We talked about how weird that was.  He said that the pokes didn't really hurt.  We then talked about everything he had been through in the past 6 months and how his pain tolerance is likely much higher at this point.  We talked about how the nurses had trouble putting in an IV catheter at both hospital visits.  He endured multiple pokes with that with a bigger gauge need I might add.  He was nervous he wouldn't feel well afterward and he had to start school the next day. First day of senior year. H...

You get the jist of the picture.  It is a little smushed. Oops. 2020 has been a crazy year.  EVERYONE will agree on that as everyone has had their own hardships to deal with.  One of our hardships was to get Ethan's health insurance to cover him going for evaluation.  When we started entertaining the idea in April that we were headed in the direction of transplant, we were told to choose a children's hospital.  The criteria given that we should base our choice on was reputation, proximity and to consider the allotment of hearts.   We were originally told that each hospital gets their allotment of hearts within a 500 mile radius of the hospital.  Hospital's that were closer to the ocean had less of a pool of available hearts.  Due to reputation, location and the fact that Pittsburgh had a 500 mile radius of living people the entire circumference, it only seemed like an appropriate fit. We moved forward and had the evaluation set up for the sec...

Person A: "Want to hear a joke about sodium?"  Person B: " Na" That is your dose of a little science geek humor. Ethan had his pacemaker and defibrillator implanted back in June 2020.  While Ethan’s one cardiologist was working on him, the other cardiologist stopped by.  He sat with me.  We discussed Ethan’s condition and how serious it was.  Then, the doctor told us it was time to start Ethan on a low sodium diet. Ethan is in heart failure. Those are some scary words that caused panic.  Is he going to die?  How am I going to tell Ethan? How do we fix it? I am the mom and the mom is supposed to fix stuff. Heart failure is defined as a condition in which the heart doesn’t pump blood as well as it should.  There are varying degrees of heart failure. Ethan has  Hypertrophic cardiomyopathy  (HCM) with restrictive tendencies.  HCM  is a disease in which the heart muscle becomes abnormally thick. The thickened heart muscle can make i...

This afternoon Paul and I had a phone call meeting with the doctor assigned to Ethan’s case while he is in NYC.   https://www.columbiadoctors.org/irene-d-lytrivi-md Apparently there are 6 doctors and 5 PA's (or was it the other way around?) and they all work together as a team for each patient.  I feel it went well.  They gave us a little bit of information about the transplant program and we discussed setting up a time to get Ethan there for an evaluation.  Their evaluation (unlike Pittsburgh) will only take 2 days. Obviously we will have to allot for travel in there. Here is the bright side.  Paul can go! They will allow both parents for the evaluation and transplant surgery, but only one parent can be with him while he is in the hospital. The Ronald McDonald house is closed, so that is a bummer.  It would have been helpful for us to be able to stay there but once again STUPID COVID strikes and screws us again.  They said that Columbia Medical C...