For Sebastian and Destiny

Not every situation ends how you expect or hope.  Yesterday was a sad day and a reminder of how fragile these situations are.  Sweet little Sebastian was here as a baby when we were here with Lindsey.  They thought he was going to need a heart transplant, but a surgery they did ended up working and he was able to return home. In May we saw this family again as Sebastian had ran into some difficulties with his heart.  He was in critical condition and not doing well.  Over the last 5 weeks, he had stabilized and was doing better and to a point where they could put him on the transplant list.  With each up there is so much hope given to you, you feel like you can see things working out and the opportunity to go home again as a family.  Yesterday morning, I ran into Sebastian's mom and she told me he was placed back in the CVICU.  He had been on 3 west for almost a week.  The doctors decided to do an emergency surgery to place him on the device Gage is on.  He did not make it out.

Destiny had a liver transplant and had been doing well.  Hunter was riding the bus and going to the same school as her younger brother and sister.  She contacted an infection and did not recover.  Yesterday 2 special spirits returned to Heaven.  I know their suffering has ended and they are in a better place.  Though, my heart aches for their families and their loss.  You put so much energy and time and would give anything to get your child well.  Then to have it not turn out how you are hoping.  I just can't and don't want to imagine how that must feel.  What a humbling reminder that our plans are not God's plans.  His timing is not our timing.  I don't know how we have cheated this for 3 times now.  Will we cheat this a 4th?  Who knows, I guess we need to prepare ourselves for any possibility.  Knowing these families and feeling their loss really puts a perspective on how our donor family must feel.  How can I possibly hope for that.

Gage is doing well and we are getting out of the hospital today.  His bleeding has subsided and they replaced his feeding tube.  Now they are going to start his feeds that usually run at night to make sure he tolerates everything well, and then we can be released.  He is in great spirits and acting like his typical self.  This morning I came into his room and it smelled like onions.  I asked him what he ordered for breakfast and he said a hamburger.  Really! A hamburger for breakfast?  He had a big smile on his face and said very excitedly, " You can do that here, you can order a hamburger for breakfast."  Of course, he didn't even eat a bite of the hamburger, he just wanted the pickle that came with it.  Funny Boy!!  Hug your kids even tighter today and enjoy every moment you have with them.