Day 300, Labor Day

September 4, 2016

Here’s the deal. Several weeks ago some of the Calif doctors gave approval for Gage to go home to Oregon for a short 2-3 day trip.  We were excited and start making plans.  We planned to bring him home this Labor Day weekend and surprise Megan, grandparents and others.  That was a couple of weeks ago.

This last Thursday Dr, Rosenthal, the head of the department, and the doctor that has been with us from the beginning, wanted to meet with us.  We had a bad feeling about this.   I called in from Oregon on a conference call and listened in.  As our medical adviser, he wouldn’t advise us on going to Oregon.  There is just too much as risk with everything Gage has going on inside of him.  The 3 main risks Gage has on the HeartWare is 1) stroke, 2) bleeding around the heart, and 3) blood clot inside the LVad (heartware).  If any of these problems were to occur in Oregon he probably wouldn’t survive.  We even had one of the Baker doctors call and review with Calif and he agreed.  Bummer!! The choice is still our, and we could do it if we wanted to accept the risk.  Sometimes I think I am ok with it.  He is doing so well, and it is only 3-4 days away from Calif.  BUT if something were to happen, I would never forgive myself.  So for now, he is staying in Calif.

We also asked Dr. Rosental about where Gage is at on the list.  According to Dr. Rosenthal, kids on the list get several ‘offers’ for transplant depending on how desperate the kid is.  If the child is in relatively good health the doctors can wait for the ‘perfect’ match or they can accept a less than perfect heart if the child is in desperate need.  Lindsey, back in the day, had 3-4 offers before they accepted the heart she has now.   Having said that, Gage has NOT had a single offer yet.  So who knows, but we could be in for a long-rrrrr wait.

Stacy and I are rethinking how we are running this show.  With all the kids in school and activities, I have scheduled more trips to Calif to help out there.  I love being here in Oregon with Megan and supporting her in her activities, but for now, I am needed in Calif. Megan is going to stay with Justin and Emily, and Stacy or I will come back to be with her when we can.  It has been a very difficult decision, but for now, this is what needs to happen.

Having said all this, Sierra enjoys playing in the pep band and working one day a week, Megan loves volleyball, Lindsey is playing junior high volleyball, Hunter is trying 5^th grade flag football, and Gage is excited to be a cub scout.  We wish we could all be together, but not yet.

They are still in the house in Los Altos, not sure when we will move back to the RMH.

Saturday I was in Dufur Oregon waiting to watch Roper in a football game, Megan played earlier and struggled again in a game against Crane.  The last time I was here in Dufur was 1994 as Jake’s football team was beat in state football playoffs.

After the game, we heading to my sister’s place in Princeton Oregon.  I’m impressed if you know where that is.  It is south of Crane in a very remote part of Oregon.  Garrity and Seth blessed their baby Sunday at church and we wanted to be there to support.

That’s it for now, Megan’s school starts Tuesday and I fly out Wednesday for Calif.

Still no camera. Till next time,

Jason