Thursday, November 20, 2014

PreTransplant Evaluation

Today was Josh's big day at Stanford.  We had appointments scheduled from 9am all the way until after 5pm.  We met with various transplant specialist and learned a ton.
It's an interesting process because in some ways I realized it was almost like a job interview, they are making sure we as a family are right for transplant, just as much as anything else.  We spoke with social services, a nutritionist, two ladies from psychology, nurse practitioners and our primary cardiologist.
While it made for a long day it was just what I needed to really understand the process of transplant.   As I said in my last post it's not at all cut and dry and there was quite a bit to discuss with everyone we met with today.  We had a great discussion with our cardiologist, she's wonderful and she really took her time with us.  She is confident Josh will have a favorable outcome, and she made us feel so much more at ease.
With that said we discussed Josh's current quality of life, which is really quite good.  His worrisome symptoms from just a few months back have really improved.  She seemed to lean towards recommending holding off listing Josh for transplant briefly, but keep a close eye on him.  When he becomes symptomatic, or has a decline in function we'll have him listed.
Stanford has a council that meets and discusses potential transplant cases.  The council is made up of the clinicians we met with today, and the entire transplant team (there may be more people involved, but I know these people are there for sure).  After they discuss our case next week the team will make a decision as to whether or not Josh is a candidate.  There are several reasons why one would not be a candidate, but we were (unofficially) told that they saw no reason he'd be ineligible.   So we're pretty sure when they get back to us they'll suggest we watch him closely and meet regularly.  But it's possible they will feel the timing is right to list him.  If that's the case they'll also let us know what status they decide to list him.
Status 1A is reserved for the sickest children who are hospitalized and on specific IV drugs.  1B is for those who suffer from poor growth due to their failing heart.  Status 2 is for those who are less critical  and finally status 7 is kind of a holding status for people who have been on the list but may have become ill or are currently not in good shape for a new heart (perhaps they have the flu), but they return to their original status as soon as they are able.
On that note we realized today that Josh lost a half a pound since his last visit in September.  It's never good for a small child to lose weight.   They are assuming it's because he's been feeling better and has been very active.   He's really had poor growth for a few years now which leads me to believe he'd likely be listed as 1B status.  The higher the status the shorter the wait for a new heart.
But I don't want to get ahead of myself because it seems like we'll get a few more months at least until he's listed.
Overall, Jon and I walked away feeling some relief.   From everything we learned it's going to be a very difficult and lengthy journey.  But we have more confidence now.  It feels like everything we've experienced prior to this point has prepared us for the road that lies ahead.
So we continue to take things one day at a time, and appreciate every one of those days.

(this is his drawing of Kaepernick....but I'm sure you could tell;)

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