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

Days 424-428

January 6,
Jason here,  Gage continues to do great. He had a clinic appointment yesterday and the only issue he has is that he has worn out 2 more batteries from ole’ Backwood.  They adjusted his feeds and a few meds but all-in-all he is ready for the call.  We asked the doctors if there have been any offers for Gage that they have turned down.  According to them not a single one! That blows my mind.  How can we go 14 months and not a single offer? As King Julian says on Disney’s Madagascar, “How long is this going to take!?”  We had big hopes it would happen before the New Year, but not yet. Maybe in 2017, right?

Kids are all back in school. Not a lot of excitement there.  Right now I am flying back to Oregon for work and to support Megan in a couple of big games.  Hunter is starting YMCA basketball.  That will be good for him (and the rest of the family) in soooo many ways.  He needs to burn energy, especially when we live in a cozy RMH.

We have biopsies for both Lindsey and Sierra next Tuesday. Hopefully that goes well.

About ready to land.  We are going from 45 degrees in Palo Alto to a beautiful sunny -6 in Boise.

Till next time..

Jason

A little fun in the Sobrato room on 3 West with Owen, another kid waiting.

January 10, 2017, 

Day 428,

Well today it’s been 14 months on the waiting list (but who’s counting).  Heading back to Calif via flight delays and rerouted through Seattle.  With the winter weather they had to cancel and change flights. 

Bummer on this trip home. I went home specifically to watch Megan play in 2 big league games (and get some work done at the office).  Big winter storms came in and both games were cancelled. Bummer!!  I did get to watch my nieces, Keanna and Dalley Jo, play an exciting Junior High game against Union.  Keanna was high point and played one of her best games yet. Other than that we help feed cows, and plow snow.  

The Saturday evening storm was a doozy. The roads were drifted in with 3-6+ foot drifts.  They even cancelled Sunday church and Monday school just to give the county time to plow the roads. Right now I would say we have about 2+ feet of standing snow in our yard.  Ya know, it just feels like winter. Back in Calif it has been raining a lot. They have even had some flash floods in areas.  That is how Calif does winter.I am planning on being in Calif for the next 11 days. Guessing I will probably miss at least 5 of Megan’s games. Double bummer! 

Tomorrow, Wednesday Lindsey and Sierra have biopsies.  Both at 9:00 am.  It would be really really really nice to NOT have any major issues…just saying.

 

Hunter is starting YMCA 5^th basketball.  He has been looking forward to this for a long time.  He is on a team with several of his good friends.  Games start Jan 21.  He is also signed up for Little League baseball which will begin after basketball.  He had baseball tryouts last Saturday.  He was REALLY nervous for that.  I guess there were 6 coaches with clip boards watching the boys as they went through drills.  I kept telling Hunter they are not going to cut you from the team, they just want the teams to be balanced.  That didn’t  help much, he was still nervous (as I would have been).

Gage is still our Man-of-Steel doing his thing.   One of these days this little world we have created is going to be interrupted with the ‘call’ but not yet….

Till next time, Jason   

 Cold day feeding cows.

 Our drive way. 

Day 419, Looking Back at 2016

Jason took Megan, Hunter and Lindsey back to Oregon for the New Year holiday.  Sierra had to work and I wasn't feeling comfortable taking Gage home with bad roads and snow storms.  Jason was ready, willing and confident we would be fine, but my reserved self didn't feel as confident.  So, Gage and I stayed behind with Sierra.  It was a tough week, I will not lie. Megan had a basketball tournament in LaGrande.  She didn't play as well as she wanted to.  She took it pretty hard, she knows what everyone is sacrificing for her to be home and wants to do her best.  I think the pressure just caught up with her.  We suggested to her about coming back to California, but she is pretty adamant she wanted to stay at home to support the team.  We will continue to support her from California the best we can.  Jason continues to go back and forth so he can attend as many of her games as possible.

 I checked in with Jason and the kids, and they had all kinds of fun stuff planned for each day.   They had basketball tournaments to attend, cousin sleep overs, Lindsey's birthday to celebrate, sledding at Little Alps, and an evening of roller skating, laser tag,miniature golf and pizza.   Not to mention the really fun New Years Eve celebration with cousins and friends.

I'm afraid I was not as adventurous here.  We did a whole lot of nothing.  We were really grateful when our friends the Clements called and invited us to the beach on Thursday.  We really needed to get out of the RMH.  New Years Eve, they had a snack bar at the RMH, and the TV was on to watch the ball drop, but there were a few of us who were here last year, finding it hard to be celebrating the fact that we are still here.  Sierra was gone babysitting, so it left just Gage and I.  We called it an early night and headed to our room around 9.  As I got back to our room, I was looking through all of our pictures of the year 2016.  Starting in February and ending to the one I took of Gage celebrating New Years.  I was overcome, with such an appreciation for how blessed we have been.  I know I won't mention everything, but here are a few things that came to mind:

• The fact that Dr. Maeda was willing to try the HeartWare on Gage, where Gage was borderline of being too small for the device.  This allowed Gage to not be in the hospital - HUGE BLESSING! Those days of Lindsey in the hospital are not forgotten.
• Gage was only hospitalized twice this whole year.  Once for a flu bug, just for observation to make sure he stayed hydrated, and a second time for observation when his feeding tube started a bleed somewhere down his throat.  Both times for observation, neither time for issues regarding his VAD.  We have been told multiple times that almost all VAD patients are readmitted within the first 2 weeks of being discharged and multiple times after for drive line infections or low flow alarms from not drinking enough.  I can't say it is because of my care, I have to say because we have been so blessed and looked after.
• The multiple people we have met and have influenced our lives.  The amazing friends we have made here that are always inviting us into their homes for dinners. Friends who offer their cabins, houses or invite us to their beach houses. 
• The Van Elderens, who allowed us to stay in their home for the summer.  We were able to have family come and visit and stay with us and make treasured memories, because of their generosity.  
• The families here at the RMH, who are struggling just like us.  Friends and family back home that are watching over Megan and keeping their eye on her for us.
• The impression I had to register Gage for regular public school, instead of the hospital school. How good that has been for him socially, emotionally and academically.  
• I was hired to be Gage's nurse and get to be in his classroom with him.  The amazing staff and school that have been so welcoming of our family.
• The great experience the kids are getting by attending school here and the great friends they have made. 
• The opportunity to take Gage home for Thanksgiving and be together as a family in our home.

No, we were not able to be at our home this past year, and no, this was not an ideal situation.  BUT, looking back at all of this, I can't help but be thankful to a Heavenly Father who has blessed us so much! Some day, Gage will receive his transplant, but until that day, we will continue to count our blessings and live each day one at a time.

 Gage's snacks for New Years! He only took a bite of each.

 His Ninja Turtle Pinata given to him by Jenna his Nurse Practitioner.  Pictures of breaking it to come later.

 Lindsey's great friend Kirtana and her wonderful loving family who had us over to decorate yummy Christmas cookies. Thank you Patrick and Anitra

 At our friends the Gees' cabin.

 Anuj and Gage at Jeremy's celebration of life.  

At Santa Cruz National Bridges Beach.  Very pretty and warm. Had some really fun tidepools.

Now for some pictures from back home.....

 This would be Little Johnny boy and Hatley.

 Still a winter wonderland

 Lots for cousin time, and Brogan

 Lindsey's birthday breakfast. Megan made some great German Pancakes.

 Range and Hunter

 Lindsey and Axelrod up tubeing

 And of course, a train.

New years eve party at Nick and Hilary's.  

My pretty wife solo at the RMH.

That is NOT grey, it was the consequences of a good tubing run