Sunday August 28, Day 293 or 206?

Thursday, August 25, 2016

It has been a great week with the family in Calif. Nice to eat as a family, support our kids in their activities, and help where needed.  We really missed having Megan with us.  Now I am flying home and don’t have immediate plans to return. 

Megan will be going to school in North Powder, so she has been home going to volleyball daily doubles.  Her first game is tomorrow, Friday and will continue with games through October.  I need to be home to be a Dad and support to our daughter.

Sierra is a Junior at PALY and will be busy with pep band, dance and school.  Lindsey is a 7^th grader at Jordan middle school and is signed up for volleyball. Hunter is in 5^th at Nixon, and ‘ole Gage Auelius is a 2^nd grader at Nixon both of them are involved in cub scouts.  Stacy is an official school nurse at Nixon and will tend to Gage’s medical needs as he goes to a ‘regular’ school.  Having him in a regular school is sooooo good for him in so many ways.  Thursday Stacy and Gage made a presentation to his class to explain his heart condition and why he has a feeding tube and a backpack. I was there for it and he did a great job. 

We are still in the Los Altos house.  Love living there!  But will be moving back to the RMH when a room opens up.  With Stacy there by herself and the distances from our house to schools, hospital, and activities it would be easier to be closer. Just not sure when the move will happen.  But oh do we enjoy living in a house. 

Time to land. Excited to see our daughter. 

Sunday, August 28.
It is amazing how my life changes once I get back to Oregon.  We really do have two completely separate lives we live.   Good to see Megan and support here in her activities.  Went to the Friday volleyball game against Union and the Saturday Grant Union Tournament in John Day.  Those volleyball games are so exciting to watch.  Feel like I am going to pass out from holding my breath as some of those long volleys go on and on.

Still no word on when we are moving back to the RMH, but Stacy is cleaning and organizing for the move when it come.  Crazy, but somewhere, sometime, somehow, we are going to get the call in the middle of all this and everything will change, but not yet.

Got the full scoop on his status on the transplant list.  When he is a status 1a, this means he is on the list of highest priority.  These kids are either on mechanical support or desperately ill in the hospital but ready to receive a transplant.  Status 1b or status 2 also means you are on the list, but not as desperate as status 1a candidates.   Status 1a always gets the transplant in front of 1b or 2, no matter how long they have waited.  

Status 7 is when you are suspended from the list for any reason.  Usually the reason for a status 7 is that the patient is too sick or is recovering from a surgery.  No matter how sick the patient is, if he is status 7 it does not count towards 1a waiting time.   However, if Gage goes Status 7 he does NOT loose his 1a waiting time he has accrued so far.

Here is what I have learned. Gage was 1a for 1 week back in early November, then became too sick and was put on the HeartWare machine.  For 3 months, from November to February, he was status 7 as he recovered from the surgery. Then after he fully recovered from the HeartWare machine surgery, he went back to Status 1a.  Those 3 months do not count towards his 1a waiting time. So on the records at UNOS, he has been status 1a since February, (plus 1 week in November) or about 6 1/2 months or 206 days (but who's counting?).   He does NOT get credit for those 3 months when he was too sick to get a heart.  Whether or not that is fair (if I can use such word), that is the way it is and now I know.

Excited to be home with my daughter but still missing the crew.

Yes the hair is growing longer, but still not long enough for the desired 'Man Bun'.

Sorry no pictures, the camera on my phone doesn't work right now.

Till next time

Jason