Phone call with NYC Cardiologist

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 Center is close to the George Washington Bridge so that we can stay in NJ in a hotel. 

https://columbiasurgery.org/pediatric-heart - Link to the hospital

We find out in a week or so when Ethan's evaluation will be.  I told them we will do whatever time they give us. Paul and I will make it work with our jobs somehow. I am thankful that we both have supportive work environments.

The sooner we can get him there the better.  The sooner we can get him listed, especially as a pediatric transplant, I will feel better.  Pediatric transplant patients have their own set of rules put forth by UNOS.  UNOS is the United Network for Organ Sharing.  If Ethan is listed while he is 17 he will NOT lose the pediatric listing once he turns 18.  This is in his favor.

https://unos.org/ - Link to UNOS

Ethan has decided to complete his Senior Year remotely.  Because of this decision, the school has limited his course options to core classes.  He had to drop all his other classes.  He will be taking Gym, Social Studies and English.  Depending on what happens with this upcoming evaluation, he may or may not try to get a second job.  His Racewarz job is only once a month and will be discontinued during the winter months.

Avery will be doing the Cohort learning and will attend school on Mondays and Thursdays.  She will do remote learning the other days of the week.

We just spent a week at the Thousand Islands and had a wonderful trip.  We are going back for the holiday weekend.  Ethan is bringing Jesney.  We all just love her.

We will keep you posted on our progress.