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;)

Friday, November 14, 2014

Heart Update

Today I took Josh in to see his cardiologist at Kaiser.  She's really good & it was nice seeing her return from maternity leave.  Since she referred us to Lucille Packard we see her a little less frequently because we're also seen at Stanford's clinic.  I think we are averaging monthly visits between both centers.
Lately, Joshua's symptoms have improved so this whole process of pre-transplant is a little hard to swallow since he's doing seemingly well.  Today our doctor told us how very fortunate we are that Josh is doing so well on the outside.  We've heard that often.  She said with a little laugh, "Ya know, this is not typically what high Fontan pressure looks like."

After talking with her and telling her it felt a little strange going through all of the transplant prep when he is thriving, she explained in great detail the ramifications of his test results.  She referred to it as the the "silent threat" that lies within his little body and explained what it could potentially mean long-term, not only for his heart, but also for his lungs.  None of this was new but it was good to be reminded again that there are some serious issues...I so easily forget.   I think forgetting is how I cope.
This whole transplant process is so much more complex than anyone could imagine (unless you've lived it).  It's not cut and dry, there are no clear answers.  It leaves us as parents with a terribly difficult decision to make, a life-or-death decision really.  The stakes are so high that I'd much rather run and hide than make a decision that could have a devastating outcome.  But that's what we have to do.
Anyhow, besides having a good long talk with our cardiologist, there have been no significant changes with Josh's heart.  It's holding steady.  While I'd welcome a miracle right about now, I'm incredibly grateful that we didn't walk away with any worse news.
So now Josh has officially done all of the necessary preparatory tests, we'll go to Stanford next week and get the transplant ball rolling.  Hopefully we'll walk away feeling like we are doing the right thing & if not, we'll reassess.  We can always reassess.
In the mean time, he's feeling good, he's active and he's happy.  That's all we want for him, so we're happy too!

(side note, isn't he the most handsome? Liz Perryman Photography took our family photos this week...I'll share more when I get them.)

Tuesday, November 04, 2014

The Best Day Ever!

After Josh attended the 49ers Training camp I wrote a 'thank you' letter to the program director.  She was very touched hearing Josh's story and asked if it'd be ok if she nominated him for their 'Champion of the Game' program.  She explained that it was a program for children who have faced difficult challenges and did so like a champion.  She told me if he were selected he'd be given tickets to a home for our whole family!
This was the best news I heard in quite some time!!
Shortly later we were notified that Josh had been selected as the 'Champion of the Game' on Nov. 2!!  We could hardly believe the news & could hardly stand the wait!

Sunday was our big day...November 2nd!  Let me just say, it was an experience we will never forget & exceeded our expectations.  The stadium itself took our breath away.  Our seats were awesome & we had access to the Yahoo Fantasy Lounge, which was beautiful! There were no lines to wait through, for the private bathroom or for food...we felt so VIP!!

After being escorted to our seats Josh quickly spotted Kap, who he LOVES!  He really enjoyed watching them all warm up, I think that was just as cool as anything else!  Did you know Jim Harbaugh still has a really good arm?  He and Kap would take turns throwing long passes to the other players & I have to say I was really impressed by Harbaugh!!  Another player Josh really loves is Frank Gore...he was really excited to watch Gore in action.

We had a great view and thoroughly enjoyed every minute of the experience.  The times we'd normally be screaming at the ref on TV, we just smiled and said, "Too bad!" know your having fun when horrible calls can be brushed off!
It was wonderful & we are so grateful to the 49ers organization for making a dream come true for Josh (and the rest of us!).

Go Niners!