Quick Update - November 8th

Gage and I were released to come home this weekend.  We left as soon as clinic was over and hit the road not looking back.  We made it to Redmond and was able to watch Megan play in the state volleyball tournament.  Sadly, they lost to the 2 teams they played.  However, they left with a great experience and good memories.  It was so great to be there and watch her. With the added bonus of us all together as a family.  Megan played well for being a Freshmen on a varsity team.  I am very proud of her.

I wish I could say that Gage is getting better, but he does not seem to be heading that direction.  He is starting to get stomach aches again that last most of the day.  He is vomiting most mornings (mostly dry heaving, as there is nothing in his stomach) and eats hardly anything.  In the afternoons he will feel a "little" better and eat a "little" bit.  But, definitely not enough to sustain him.  I went up to 50 mL/hour on his feeds (which is less than 1/4 of a cup/hr).  He holds the feeds down, but complains of stomach aches with the vomiting.  So, I am attempting to turn the feeds down tonight to see if that makes any difference.  Bottom line, we are headed to California Wednesday, I am certain we will not be coming home this time.  If he can't tolerate that small of feeds, his heart failure is worsening and the next step is milranone.  This is the IV medication that both Sierra and Lindsey were put on when they were first diagnosed.  It would help for a little while, but not for very long.  IF Gage goes on this medication, it would put him at a status 1A on the transplant list, instead of a 2.  This would move him up on the list.

The doctors met Friday and felt "unanimously" that Gage should be listed at a status 2 and we could wait at home.  That of course, was before we have let them know Gage's decline over the weekend.  The good news that came out of the meeting is, our surgeon (Dr. Meada) felt confident that he could fit a heart ware device in Gage.  This is a device like the Berlin.  It assists the heart in pumping, however, the kids that get it can be out of the hospital and live at the RMH.  This is huge.  IF we move our family down there, we won't have to live at 2 places, the RMH and the hospital.  Gage can go to games and outings with us and not stuck in the hospital like Lindsey was.  So, there is the upside to our new adventure that we are embarking on.  We will take that.  For now, Sierra, Gage and I will head to California on Wednesday.  Sierra has biopsy and diabetes appointment and Gage will have clinic.  Then Sierra will probably return on Saturday and Gage and I will stay there for the long haul.

Megan's biggest fan Johnny Boy sporting her number.

The kids saved Gage his pumpkin to carve.  So, tonight he and Sierra carved his pumpkin.  It's the brightest lit of the 3 pictured above. Hunter carved a big one that was out of our garden,