Update

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 "bubble" staying away from people.  We will be making sure his exposure to things are as little as possible.  Also, after transplant he will be VERY limited as to what he can eat, as it needs to be prepared a certain way.

We are working on planning a move as well as many other details.  I am delighted I will be able to do some work remotely because that will help us so much financially.  More details will come as we figure some things out.

We appreciate everyone thinking of us and all of the thoughtful offers to help.  💖