Moving Up to 1A Status

Gage had clinic yesterday.  The doctors cleared him to go to school!! His influenza swab came back negative.  His INR is high (blood is too thin), so they reviewed with me the signs and symptoms of stroke (that always gives you a warm fuzzy).  They also told us that Gage is doing so well that they have decided to move him up to a 1A status.  They were going to wait until the 20th of March, but have decided that now will be fine.  This is great news! He has been at a status 7, meaning he could not receive an offer if one came, but he is accruing time.  So we are now at day 93 on the transplant list and our true wait begins.  Gage was also seen by a large group of doctors from Michigan who are looking into starting a HeartWare pediatric program there.  They were very interested in "Bluewood" and liked how Gage packed it around like it is part of him (which it is). Gage was very excited to return to school. He had a great first day back.  However, the kids don't have school today through Monday for the Presidents day weekend.  So, he was able to go back for part of 1 day, but will officially return on Tuesday.

Megan had a choir concert Tuesday and Wednesday this week.  It was quite a concert.  There were a lot of solos.  It impressed me how these kids just put it all out there.  They sang pop songs from all genres.  There was a large group of kids, so the concert ended up being 2 1/2 hours long. A little longer than we were expecting, but all the numbers were great.  Megan didn't have a solo, but sang 2 numbers with the beginning choir. Needless to say, this made for 2 really late nights and the kids were dragging Wednesday.  The only way I got them out of bed Wednesday morning for school, was the promise that there was no school today.

On a heavier note, yesterday was a rough day of being reminded of our blessings.  There were 5 kids on VAD's when Gage was on the 3rd floor.  One received a transplant, one was on a different device other than the Heart Ware, and that left 3 of us at the RMH.  2 were teenagers around the age of 14.  One of the patients had returned home because he was doing so well and lived close enough by, they could be there to wait.  This patient passed away.  I don't know the logistics or the cause, but he was stable and doing very well.  It just makes me nervous, we certainly can't take the fact that Gage is doing well for granted.  He could have a stroke or any other complication out of the blue and not make it to transplant.  We also heard of another family who (not at Stanford) got the call for their little girl to get her heart.  The little girl came out of surgery, but ended up not surviving the transplant.  We have been through 3 transplants and the outcomes have been so well that we start to think it is routine.  What a great reminder that life is fragile, these heart kids are fragile, each day with them is a day to embrace how special they are.  I feel so sad and my heart aches for these 2 families.  I myself cannot wrap my head around losing any of my children.  But the reality of it is, I very well could.

This is half of the kids at Megan's choir concert.  They did a great job.