November 27, 2016, Sunday

 

November 27, 2016, Sunday

What a great weekend. It was so nice to be home for a few days. For a few moments, it actually felt like home, and our issues were in the past. We gave thanks many times for the chance to be home. 

Thanksgiving we spent a very lazy day at home. We had our parents over and thoroughly enjoyed the day.  Gage ran around and pulled old toys out he hasn’t played with in a very long time.  He pulled out the Nerf guns, Nerf swords, train tracks, Thomas the Train, and a closet full of other treasures. 

Friday we helped my brothers get firewood.  Crazy but we kinda enjoy doing that kind of work. 

Stacy’s sister Holly and Morris drove here from Logan, Utah just to spend the day with her. It was great to see them.   We even took some time to go through the kids’s rooms and put away boxes of ‘stuff’ I have been bringing home for the last year.  We ended up with at least 10 bags of clothes and things to donate.  We also went through and did a little cleaning.  Especially the dead flies and dust that had accumulated in all the window seals. It was a good start with much more to go. Also took a pass through a very neglected yard and garden.

Saturday we took long overdue family pictures and played basketball.  That evening we had all my brother’s families and parents over for desserts, games and a crazy round of Nerts. We were missing our sister Garrity and her crew.  If my count is correct we had 12 adults and at least 25 cousins ages 2-19. It was awesome.  The overall winners of Nerts was my sister-in-law Tara teamed up with, the experienced card shark and Nerts expert, our daughter Lindsey Lou.  If you recall, during Lindsey’s ‘Berlin’ days waiting on 3 West, we played a LOT of Nerts. So, needless to say, Lindsey was in the zone.

We were really hoping we could all go to church today and sit as a family.  But given the 13 hour drive for Sierra, Hunter and I, school tomorrow, and Stacy and Gage’s Angel flight plans we had start the voyage back to Calif without seeing our good friends at church.  Sorry.

We did text Jenna, Gage’s nurse practitioner, each day to check in and keep her updated.

My parents loved having the kids especially Gage, over to hang out, eat treats, play the piano, help feed cattle, and play Chinese checkers. Gage even interviewed my Dad for a homework assignment from his 2^nd grade teacher.

All-in-all, words can’t express how nice it was to be home for a few days.

Looking forward, I have 2 days in Calif, then I am flying back to Oregon on Wednesday for a week.  Even though I was home, I didn’t get much office time in.  Also, Megan has her first basketball game coming up and I wanted to be here to support her.  All the kids are back in school tomorrow bright and early.

   

  

Day 381, Thanksgiving in Oregon

Thanksgiving Eve.

We have pulled a fast one. After much planning, preparation, and coordination with doctors, pilots, life flight, angel flight, and others we have decided to take Gage home to Oregon for the holiday.  Stacy and I are very well aware of the risk.  Calif has explained the serious risks of stroke and bleeding and would rather have Gage close to LPCH.  But Stacy and I have been surrounded by a kid who has done great for a year now and feel we can take him home for a few days.  If there was a problem or if a donor heart becomes available, we have local doctors, a private local pilot and Life Flight available to get him back to California in about 2-3 hours. 

So there you go. This morning Stacy, Gage, Hunter and all of Gage’s equipment left on an angel flight for Oregon.  Sierra had clinic, echo and blood draw this morning.  After the good checkup, we took off in the suburban for Oregon. Apparently most of the Bay area was also leaving. We were in heavy stop and go traffic all the way to the Lake Tahoe turnoff.   Now we are traveling through the wide open roads of Nevada.

Back home Gage and Hunter have had a fun filled day so far.  They were met at the Baker City airport by a host of cousins and have been playing non-stop.    We have no major plans for the next few days, just want to spent time at home with family and friends.

As for the last two weeks, it has been business as usual. Kids have been in school. I have worked at my office, Stacy has been a busy bee running the show, and Megan has been living at my brothers, going to school in North Powder, and playing basketball.

Jenna, the heart failure nurse practitioner, planned a 1 year anniversary party for Gage.  It was held in the Sobrato Room on 3 West.  It was great to see nurses, doctors, school teachers, social workers, patients, and others make an effort to come and support Gage in his wait for a heart.  It's kind of a big deal, he is the youngest and longest patient to be on this devise.  They celebrated with dill pickles, cookies and ice cream. 

We will report back after the weekend.

Thanksgiving day.  We made it here at 11:30 pm. It is always a long trip no matter how you break it up.  It is soooo good to be here.  We have enjoyed a traditional Thanksgiving with a morning run, playing basketball, feeding cows, eating until it hurts, and now relaxing.  Our favorite part of being home is all sitting together at the table for a meal.  Very nice.  Honestly, words can not express how nice it is and how grateful we are to be home all together. 

We have checked in with Jenna, Gage's nurse practitioner, several times to let her know how Gage is doing. So far, so good.  We just need to call to come to really get things hopping around here.

Till next time

Jason

Gage's one year anniversary party pictures

 Crazy hair day at Nixon School

 Stacy and I on our run this morning

 Gage's party invite.

More crazy pictures from the RMH

Day 370, Highway 95

Day 370 Nov 13, 7:45 pm

Well here we sit on Highway 95.  Megan and I are driving back to Oregon. Had a great weekend with the family.  Right now we are sitting on the side of the road waiting along with 30 plus other vehicles.  Ahead of us there was a terrible traffic accident and so far there has been 3 life flight helicopters go by and 2 ambulances.  Bad deal!  We may be here for hours and happy to do so.  We are just glad we are safe and sound.   Now a 3^rd ambulance went by.  Anyway, Megan and I had a very creepy thought.  What if tonight is the night? It’s a horrible creepy thought, and I feel guilty for even thinking it, but what if….

Anyway, life goes on in Calif and Oregon.  We flew Megan down for the long weekend and loved being together as a family.  It has been 2 long months since we were all together.   By far the most enjoyable time we had was preparing, cooking and eating together as a family.  All 7 of us sitting together enjoying a meal we prepared from food raised (or killed / butchered) was a very satisfying experience.  By the way, I cooked a mean steak on the grill.

 

Gage keeps on ‘keepin on’.  Main issue right now is his weight and nutrition.  He is still 49 pounds and has only gained 5 pounds since March. They are starting to add additional feeds and supplements to his feeds. Every night he takes olive oil to get extra calories. I thought that was interesting.  The theory is that Gage is so physically active, he is burning more calories than the standard kid on the HeartWare.  Imagine that.  Speaking of active, Saturday we went on a 2.4 mile hike in the foothills above Los Altos Hills.  Very enjoyable!  I did carry Gage up some of the steeper parts, but he walked most of it.

Still not sure what to do for Thanksgiving.  We all want to go to Oregon for the holiday, but Gage is still on a heart machine, but he has done great for the last 9 plus months, but he needs to be close to the hospital for the big ‘what if’, but the ‘what if’ never happens.  Gage acts so good and would love to go to Oregon for the weekend, but again, ‘what if’.  This has been a very difficult decision for Stacy and I, we still haven’t made up our minds yet.

In our last blog update, Stacy articulated our feeling the best in the last paragraph.  We know it could be a lot worse.  It has been a full year now and Gage is NOT in the hospital on the Berlin, or on IV’s. Sierra and Lindsey are not in rejection (as far as we know) and are doing well.  Hunter, Lindsey and Gage are in school and love it. Our teenagers are making good choices (we hope) and hangin’ in there.  Stacy is tired, but keeps going.  I hate traveling this much, but need to keep it going. 

Still sitting here in the Oregon desert waiting, ambulance just went by.  It has been over an hour now and could be hours still.

That’s it for now. Here’s to the start of year #2.

Till next time

Jason

ps

11:45 pm, well after 5 hours we finally got back on the road. Made it home at 4:00 am.  No call.