transplant evaluation

I seriously sometimes think this is a dream.  That it is not really happening.  But then I realize, we've spent the last week in the hospital and I haven't seen Connor this whole time and I know it's more like a nightmare.

Surprising to me, transplant evaluation is more talking than anything else.  I thought Lucy would go through a bunch of procedures, but since we got here Friday night, it's only been two.  She had a PICC line placed and had a CT scan.  The rest of the time has been meeting with the people that make up the transplant team.  This includes (but is not limited, as we haven't met the entire team):
Transplant surgeons
Transplant cardiologist
Fellows and residents (it's a teaching hospital)
Transplant APN
Cardiac nurses
Social work
Psychology
Hemotology
Transplant case manager
Occupational Therapy
Physical Therapy
Speech Therapy
Child Life
Education
Finance

One of our first questions when we sat down with the transplant cardiologist was:  'is Lucy going to be a candidate?'  In simple terms, from all initial data:  yes.  Although we have not gotten official word.  At this time we have stated to the team we would like to move forward with listing Lucy for transplant.

We are still learning about this process but here is what I know right now:
Once listed with UNOS , there are 4 statuses of wait list:
1A - child is admitted to the hospital and in need of support for help stabilize
1B - child is admitted or waiting at home depending on medical care needed
2 - child is stable but will eventually need a transplant
7 - child is temporarily unable to receive a transplant (too sick, work up incomplete, etc)

Don't ask why the 4th category is seven.  It doesn't matter because Lucy will be listed as 1A.  That means we are not leaving the hospital until she is matched with a heart and has her transplant.
Average wait time is roughly 3-4 months, however numbers have indicated wait time is increasing and 6-8 months is more reasonable.  Which means in Lucy time, we're looking at possibly year or more to wait.  We could get lucky and get a heart quickly but if history has told us anything, it's to be prepared for the long haul.

The transplant list is also not just a list where you get a number, say we're number 100.  And each time a heart is available and matched, we move up in line .  There are many factors that go into finding a heart: blood type, size, distance of donor and sickness of child.  The team has also told us that their goal is to find the best possible match, so a heart may be matched to Lucy and the team can in essence 'pass' on the heart.  Their goal is to make sure Lucy thrives after transplant and that can only be done with a best fit.  Once Lucy has been matched, the team would review all the information from the donor and if a good match, they would verbally accept the heart.  I believe at this point we would get the phone call that a heart is available (did you're heart drop too?).  The transplant surgeon would then retrieve the heart personally.  Once there, they inspect the heart.  At this point they can still decline, so we also will need to be prepared for false alarms.

Many have reached out to us and family about ways to help.  We are still figuring out ways of help that will be most beneficial for our family.  While we work to create a new normal for our whole family, we ask for prayers of a new heart.  This request is not lost on me.  I realize that in order for Lucy to live and thrive another family has to endure a fate far worse.  And in that dark time, they choose to be selfless.  So along with prayers for that new heart, I would like to add a prayer of peace and comfort for that family that will eventually give us our life back.