Friday Update

We started our day off with Ethan attending his class.  He had a presentation he had to make.  As he was doing his presentation, the team came around for "Rounds".  We have been having Ethan step in for those when he can so he can be a part of the decision making. One of the tests that is done is called a ProBNP. It measures the stress/damage to the heart.  A normal measurement is 250 or less.  Ethan's has been between 4,500 - 19,500. When we were discharged last week it was in the 4,000 range.  Today it had jumped up to7,500. When the doctor said that, he turned to me, smiling, and asked " Has he been pigging out on salt all week?" Totally busted.  We haven't been as diligent.  They then said that, it's really not too much of an issue because he will have a new heart soon.  We will continue to try to balance it but it is hard. Salads for dinner.

We have been using Grubhub for our meals.  The hospital meals are absolutely puke worthy.  I tried some of the eggs today.  Imagine the consistency of gritty clay. The taste is so bland it wasn't even identifiable as eggs.  Lunch was what looked as if someone vomited up a bunch of shrimp mixed with tomato soup (we aren't fish people) with some tasteless, zero seasoning rice and carrots. Yum!

It was discussed that because Ethan has been elevated to status 1A, he and I needed to undergo a psychological evaluation.  Ut oh! 😳 What are they going to find? The team discussed having weekly EKG's, monthly echo's until the transplant.  They said they wanted to do both this morning.

Shortly after, the psychologist came and separated us.  She sat with me first and asked all sorts of questions about our family medical history, self reflection and what my knowledge was of what to expect after the surgery. Ethan said she asked him the same questions.  They want to make sure we aren't a bunch of whack jobs that will go rogue and not take care of the precious gift we are about to receive. So I think we passed? No we passed for sure. ha ha

After the echo, Ethan's cardiologists stopped in to recap what Ethan missed on rounds and ask if he had any questions.  I had a wax tart burner on, with a flavor called Pumpkin Porch.  I wanted it to smell like Thanksgiving in our room. His doctor walks in and says "It smells good in here, like Jelly Belly, Jelly Beans."  I said " I have a tart warmer on and the scent is Jelly Belly, Jelly Beans".  He looked at me with wide eyes, "No Way!", he looked at the nurse in shock, and then back at me.  I then said "Nah, just kidding, it's a pumpkin scent, but your face was funny." We all laughed.  I told him " I have an odd sense of humor, hopefully you will get used to it."

Later, the Nurse Practitioner that we have seen multiple times came to the room.  She had explained at our last visit that they have the ability to decline hearts that they feel would not be a good fit.  She asked us if we thought we would want to know about that. "Hell yeah!" They decline hearts that they feel would not be the best for Ethan.  Sometimes due to the age of the person, or the way they passed away (with a drug needle in their arm).

She told us that Ethan got offered a heart this morning.  When an offer comes in, the donor is usually "brain dead" for whatever reason, but the family has decided to stop life support.  The donor's information is used to do a search which will find a donor recipient with the same blood type, height and weight and close proximity to the donor. They then use listing status to assess who the first offer will go to.  If there are two people that fit all the criteria, it will go to whomever has been listed as a status 1A the longest.

 The donor is then kept on life support so that imaging can be done of all the organs that are available for donation.  It could be liver, kidney, heart, cornea's etc.... Once they get lab work as well as echo and EKG, that information is sent to the hospital of the person that is receiving the offer.  The doctors then review that blood work, imaging, age of the donor and see if it is a good match.

They declined the heart that was offered to Ethan.  It was declined because it was from someone in their late 30's early 40's.  They wanted a younger heart for Ethan.  The team really wants Ethan to thrive afterward. That heart went to someone else. Hopefully it will be the perfect heart for that person.  

They also told us that in 10-15% of cases when the heart is deemed a match it ultimately can be declined when they procure it. In those cases, usually it is an instance of someone that required CPR for an extended period of time and the heart has essentially been "punched" for an hour, so it isn't going to be as healthy as they would like it to be.

This morning, Ethan's nurse came in and asked him how much water was in his water bottle.  He told her it was "half full", I turned to her and said "He has such a positive outlook." I meant that. His attitude has changed being in the hospital this time around.  He is ready.  He said he is going to be up and walking after the surgery as soon as possible.  State of mind is such an important healing tool. As Thanksgiving approaches and we will be away from our families, I am thankful that Ethan has such a wonderful team of people working on him, and we have a wonderful network of people supporting us.