What to do now..

Well we made it.  Enjoyed our first Thanksgiving home as a family.  Although Gavin is still growing 3 seperate infections he is still not showing symptoms of  being very very sick.   The plan is that as long as Gavin is doing ok we will stay home through the weekend and he will be admitted on Monday and we will start our 7 day admission to try and fight the fungal infection.  If that doesn't work then they will pull the central line and he will have a new line placed.  

I'm not sure how many of you read Gavin's site but this Wednesday we had a appointment with one of the world renowned Mito Dr's from Atlanta GA.. Instead of me trying to write it all out here is what Karen posted on his site.

"Yesterday we had our big appointment with the Mitochondrial Disease Specialist, Dr. Schoffner from Atlanta. We were really hoping that he would be able to offer some assistance but sadly he painted a very grim picture of Gavin's future. He spent some time asking us how we thought "it" would go, which made it a little easier to discuss. Everyone in the room agreed that at this point there really is nothing more that can be done for Gavin. His disease is very progressed. We were told that at this point anyone of these infections could be one Gavin will not be able to recover from. Our selection of antibiotics is narrowing as Gavin's gut bacteria have become resistant to some of the most common antibiotics. We talked about transplant and Dr. Schoffner strongly agreed with our decisions against an intestinal transplant. Gavin was sick before he went into intestinal failure so the root issue would not be cured. This was very comforting to Adam and I -- to hear someone whole heartedly agree with what we felt is best for Gavin. Dr. Schoffner recommended stopping all attempts at enteral feeding as he feels Gavin's gut will not get any better and the more we push in the more bacteria will be pushed out. He compared Gavin to a "leaky dike." --- nice huh? :)"

So this wasn't the most uplifting meeting.  Honestly Karen and I already knew in our hearts how it was going to go.  This will be hard to understand but we left the appointment feeling a little bit relieved.  Now at this point we are just going to continue our lives as they are now.  We will be fighting each infection as they present themselves.  I think the Dr's are along our way of thinking of if we can fight the infection at home they will want to try and keep us home.  

With all of this said Karen and I have put our faith in an awesome God.   We know that He is taking care of us and our family.  So no matter what we will be trusting in Him.  I know in my last post I Thanked all of you who remember our family.. but it never gets old so I just want to say it again.