December 26, Day 413.

Merry Christmas.
We did something very enjoyable for the holiday.  As bad as we all wanted to go to home to Oregon for Christmas, due to the winter weather in Oregon, we were unable to make the trip. We were all very bummed, but we had some dear friends to the rescue....

Ten years ago when Calif was very new to us, we met some good friends, the Gee's.  That have been a great support and help to us for many years now.   They happen to have a cabin near Sonora, about two and half hours from here in the foothills of the Sierra Nevada mountains. They allowed us to go there and spend Christmas in their very relaxing and cozy cabin.  We had a great time!  We had all the kids with us including Megan.  We played games, ate food, went to church in Sonora, watched movies, played pool, and had an all around great time.  Thanks Bruce and Jane Gee!

Tomorrow I am traveling to Oregon with Megan, Lindsey, and Hunter. We will spend 5-6 days there, go to Megan's games, play in the snow, a little year end work,  then back to Calif for school.  Unfortunately, Sierra has to work, and Stacy and Gage are going to stay behind.  Would love to have them all go, but the winter weather has us a bit nervous.

In other sad news, Jeremy, Sierra's teenage friend who received a heart transplant some time ago, passed away from transplant related cancer.  Very sad for their family. God bless them.

So here's to 2016, a year of waiting, with more excitement to come in 2017....

 For the record, Stacy and I had a back massage on the line. And now she owes me one.

  Notice Gage does NOT have his feeding tube.  He threw it up Christmas morning.  But that in your book. So Christmas day night, Gage had a the wonderful opportunity to have is shoved back in.

 Aurelius LOVES Legos.

 Just finished putting in the 'tube'. 

 Stacy getting her toes done by Sandra.  She was in heaven. 

Sisters counciling their little brother.  It was kinda funny.

Day 405, Sunday, December 18

Yes we have joined the 400 club......anyway,  

Once again heading back to Calif. Wish we had something crazy to report. Fortunately, (or unfortunately) we are still in the same status. At Day 405, Gage is in good health, and is ready and waiting for his new perfect heart.

Had a good and very cold week in Oregon.   After a couple of winter storms we have about 13 inches of snow in our front yard.  After the storms the temperature has dropped with highs around 10 degrees and lows around -15.  Our Blaze King fireplace is working overtime to keep our home warm.  Good to see Megan. She is still living at Justin and Emily’s when I am not there.  She stays pretty busy with school, basketball and friends (one in particular).

As of last Friday, kids are on Christmas break.  Sierra had some tough finals but she thinks she did well. Lindsey finally got all her assignments turned in, and the boys and Stacy are excited to be on break.  This week I will be changing California offices. For the last year I have been working out of a law office in Palo Alto.  That office is now closing and moving to San Francisco, so I have been looking for a new place to work from while in Calif.  I have a few options I am working on, I’m just trying to find an office that will work with our unique life schedule.

As for how we are ‘doing’. Well we are about the same as always.  In our last post, Stacy explained very well the underlying thoughts and feelings from all of us.  We see tough situations there at the RMH, and it sure puts life into perspective. 

Not sure where we will be for Christmas.  So far we have 4 plans:

Plan A: Gage gets his transplant before Christmas, Megan comes down and we spend Christmas with Gage in the ICU. 

Plan B: Megan flys down Wednesday (after the Adrian game). Then after Gage’s appointment on Thursday, we all come home (to Oregon) for Christmas. We watch Megan’s games in LaGrande, then back to California for New Years.

Plan C: Megan flys down Wednesday. Gage has his appointment, but weather or other ‘factors’ arise which does not allow us to go home.  We enjoy Christmas together in someone’s home.

Plan D: Who knows?????  At some point we will get the call, right?  We are even sending Dr Katz (the heart surgeon) a Christmas card to let him know we are ‘thinking’ about him. 

Here’s to the 400 club.

Till next time,

Jason

 Snow back home.

And Brogan...

Gage at his pancake pajama breakfast on the last day of school before winter break.

 Gage's teacher, Mary Blazinsky.

The Christmas break celebration dinner.

December 4, Day 391

Stacy here,
 Thoughts and feelings....

Sunday, December 4, 2016

There has been some sadness around the RMH lately.  A very up beat and happy man from Tuscon, Arizona has been here since June with his grandson.  His grandson (Zack) was a normal healthy child who is 12 years old.  He contacted some crazy virus that caused a deep rash and sores all over his body.  The virus went into his mouth and down into his lungs and ended up scarring his lungs.  His lung capacity went down to 15%.  He was brought here to start their wait for a lung transplant in June.  Every morning we go down to eat breakfast with the kids before school, Jay (the grandpa) would be down there drinking his morning coffee.  He would always look at Gage and say, "Today's the day Gage."  In the middle of October, Zack finally received the call that his turn had come for his transplant.  He went through surgery, came out and was doing well.  They went to wean him off the ventilator and they discovered that the right lobe wasn't working.  They took him back into surgery and removed the right upper lobe.  To make a long story short.  He continued to have one problem after another, until eventually he ended up on ECMO and was placed back on the transplant list.  ECMO is a machine that is like being put on bypass.  It takes the blood out, oxygenates it then puts it back in.  It is a LAST resort and not a long term answer.  Unfortunately, he passed away on Wednesday.  

This was really hard to swallow for a couple of reasons.  I didn't know Zack really well, but his grandpa (who is raising him) was always so positive and upbeat.  Even when Zack had passed away, he saw Gage in the garage and said, "Today's the day Gage."  One reason, It made me realize how serious these transplant surgeries really are.  We take for granted how well and easily Sierra and Lindsey have come out of them.  We just "assume" that once the call comes, that's it, all is well and we will be on our way.  All it takes is one little defect that the procurement doctors miss on the donor heart and Gage would not make it.  Or, for Gage's body to instantly reject the donor heart.  Once his heart is out, your kind of committed either way.  The second reason; Gage was getting interviewed by a really nice journalist. She wanted to do a story on Gage for February's heart month magazine for the hospital.  She asked Gage what scared him the most about getting his transplant.  He replied, "That I won't live through it."  Later that night, as I was putting him to bed, I tried to talk to him about it.  I tried to explain, that everything was going to be fine and that he would make  it out just like his sisters had.  He just got more upset and said, "No, I'm going to die."  This broke my heart to hear him say this.  No 8 year old should have that kind of fear running through the back of his mind every day.  

I know Heavenly Father is mindful of us.  I can't deny that.  I see his hands in everything we do.  Today I fasted that Gage would be okay and make it through the surgery.  That his body would accept his new heart and that it would be a perfect match for him.  I know God has a plan.  I just hope that my faith holds up when things don't go my way.  

Just some thoughts I've had today.  We are doing well.  We had a wonderful time at home for Thanksgiving.  I couldn't imagine anything more Heavenly.  We enjoyed every minute of it.  Of course, Gage cried when we had to leave, but he continues to embrace each day and love life.

Hunter at his Orchestra recital.  Loves playing the cello, he just hates practicing.

Lindsey at her middle school dance. She had a good time.

Had a beautiful day Saturday, so we took the kids to the movie Muana and then to the park to play after wards.  Hunter brought his good friend Jules.

Sunday we got to go see our good friend Jeremy.  He has had a rough go at things since this spring.  We thought we would brighten his room with some bright colored snowflakes.

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