Officially Listed Today

Gage was too tired and sick to go to school Monday.  He was still vomiting, pale and very tired.  Tuesday I was packing up to drive to California the next day, but was putting off the inevitable.  Calling California to update them on Gage's status.  I knew if I called, they wouldn't let us drive there and that was going to change all our plans.  However, I was worried at his continual, quickening decline I knew I had to call them.  So, I called them and they wanted him taken to our ER to make sure he was stable enough for the 12-13 hour drive to California.  They were very concerned and wanted him life flighted that night.  Last night Gage and I were life flighted here to LPCH.  They started him on Milranone around 1:30 AM.  So far he as tolerated it well.  He is eating better and hasn't complained of stomach aches.  If he continues to do well, there is a chance he can be released from the hospital to the RMH on milranone.  Today he had a picc line placed to prepare for long term milranone.  Lucky for them they sedated him, otherwise, it would have been him screaming until he eventually passed out.  He is not a lover of needles at this point.  He has been in bed all day watching movies.  But, we hope to go on a walk tonight.  It is always hard to tell how he is "really" doing when he hasn't eaten for over half the day and he hasn't moved.  I am sure we will see over the next couple of days.

Jason is driving here with Sierra and Megan today.  Sierra has biopsy Friday and diabetic clinic tomorrow.  It will be nice having Jason here, as I was trying to figure out how to be with Gage in the hospital and Sierra at her appointments at the same time.  Megan came along to go to a Palo Alto High School basketball practice.  The coach was her coach in 6th grade when she was here.  He called and said that they have a spot for her if she wants to come play for them.  He has been absolutely amazing!!

Gage was officially listed today as a status 1B.  A little higher on the list than we thought.  His Milranone dose right now is 0.25 if they put it up to 0.5, his status will change to a 1A.  This milranone is kind of a last step before looking at a mechanical support device.  I talked with a doctor today, who said that milranone is great, but it can also be hard on the heart.  I don't think we are to far off from mechanical support.  Time will tell.  Thank you to everyone for all your offers of help and support.  We are truly so blessed to be surrounded by such amazing people in both places.  You help make our burdens light.