Day 440 Jan 22, 2017

It was a good 11 days in Calif. Good to be with Stacy and the kids and help support them in their activities (cub scouts, basketball, school , church, band concert, homework, meals etc.) Time to head home and check in at the office and with our long lost daughter Megan.

Sierra and Lindsey had biopsies this last week.  Pressures were good with both and Lindsey got another zero! Awesome!  She is off the hook for the next 6 months.  Sierra (bless her heart…no pun intended) got a 1B. grrrr   Not sure why, but her body keeps fighting this new heart.  It’s been over a year and a half and she has only had 1 zero.  They have increased some of her meds (again) and will rebiopsy her in 1`month (3 weeks from now).  We never seem to really relax with that one. 

Gage has been having problems with his HeartWare controller.  Nothing serious, the controller (in his backpack) was not recognizing the batteries hooked to it.  At the most inconvenient times it would start to alarm saying low or disconnected battery.  Sometimes the alarm is a nice little ‘beep-boop’ and sometimes it is an all-out fire alarm screaming at you.  These alarms would go off even if he had fully charged batteries connected.  Sometimes these alarms go off at school, at recess, at the RMH, and my favorite… in the middle of the night.   Sooooo, Friday after school we took Gage in for a checkup and review of the equipment.  They wanted to change the controller out, but to do that, he had to be checked into the CVICU for full evaluation from the team of doctors.  I’m good with all that.  The pump in his heart will stop for the 2 minutes and they want to make sure is ok.   Just know that the 2 minute process will NOT take just 2 minutes.   After the 2 hour check in and evaluation process into the CVICU, the 2 minute process to exchange the device, and the 1 hour observation and discharge, he is good to go.  No alarms since.

Stacy’s sister Kelly and her husband were in San Francisco for the weekend.  They are here from Hawaii for business meetings.  We were able to spend Saturday (yesterday) with them in the City.  For the fun of it, we rented bikes and cycled across the Golden Gate Bridge.  I had Gage on one of those bike buddies, Justin and Kelly were on a two seater bike, and the rest of the kids and Stacy were on their own bikes.  We all thought it was tons of fun. Gage was having a great time behind me. 

Hunter had his first YMCA basketball game last night.  There are 11 kids on the team, four of which are hot shot ball handlers/ shooters (not Hunter).  The team has some work to do to learn to work as a ‘team’.  I will leave it at that…

I know I have mentioned this before, but it is always a strange experience going from the ‘Calif’ world to the ‘Oregon’ world. Life is so different in each location.  Going back to our home that is still waiting, with no traffic, heavy snow, our daughter Megan, and Axlerod our dog waiting for us, it is just a strange experience.  Then, once I get used to living here, it’s back to Calif; one cozy room, six people, a wife J, 4 kids JJJJ, shared kitchen with 60 other families, one bathroom, a fridge I have to get on my hands and knees to get anything out of (I get a little grumpy with that one), and good ole traffic.  Then, once I get used to being a Calif husband and dad, it’s back to Oregon.  And around and around we go.  No complaining, it’s just a strange experience.

Someday I may share some deeper feelings about this whole situation, but not today. For now all we need to know is Gage is doing great. His attitude is good.  He is involved in school.  He has most of his sibling there for support, and he is ready for the ‘call’. Everything else is just stuff.

Ready to land in Boise.  It has been a very bumpy ride. Thank goodness I didn’t lose my cookies (at least not yet)

Later

Jason

 Gage and Hunter at cub scout pack meeting.

 Finding a vein for the biopsy IV

 Heading in for biopsy with Rosalee

 Exciting night of putting Gage's feeding tube back in.  Hunter and Gage were fighting and it got pull out.  Not a fun night.

 Lindsey had lost her blanky. Sierra found it a few days later. All smiles after that.

 And Sierra's band concert.

 And Gage's MLK Day assemble and concert.

 Getting ready for Gage's controller change out.

 A little computer game to keep his stress down as they changed the devise.  The devise is sitting next to his left leg with a battery plugged in.

 Then on to SF for a day with Stacy's sister and Justin