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

Day 286, Jason checking in

August 21, 2016

Jason checking in on the plane in route to Calif.  Stacy did a great job updating the status of Gage and the rest of the crew.  I am flying to Calif now to spend 8 days here before returning to Oregon.  I have spent most of the summer in Oregon involved in the ranch operations and office work.  Now that the ranch water and haying is slowing down, I can spend a bit more time with the family.  Megan is home  in Oregon staying with my parents while she goes to daily doubles for volleyball.  The team practices 2 hours in the morning and 3 in the evening.  Her first game will be Friday August 26, the day after I get back from Calif.  After this trip to Calif, it will be increasingly difficult to get to Calif with Megan in school and sports starting early September.  Not that I can’t or won’t make trips to Calif, it is just more difficult to leave our daughter behind.

I have been trying to keep up with the house, yard and garden in Oregon.  It is all hangin’ in there, but definitely could use a woman’s touch.   With all the ranch work we have been doing, some of the details of the house, yard and garden may have been overlooked.  It is still no fun to live without my beautiful wife. I don’t know how single parents do it.  But right now this is what needs to happen and we are making it work.

Couple of weeks ago, Megan’s friends Abby and Mia came to Oregon for a visit.  It is always fun to have city kids come to the country to experience a different way of life.   While they were here they had the opportunity to ride horses, hike to mountain lakes, ride in a swather (a machine that cuts the hay), and even drive our stick shift big 18 wheel red hay truck called ‘Clifford’.  What was funny is that the only vehicle she had previously driven was a Tesla, a very nice high-end automatic electric car.  She did great following my numerous hand signals navigating her around the field.

Don’t know how we can ever adequately thank the Van Elderen family for letting us use their home this summer.  It has been so nice to be in a regular house and  be able to invite friends and family over for dinners and family reunions.  We will be moving back to the RMH here in the next couple of weeks.  With the Van Elderen’s returning, and school starting, it is more convenient at the RMH to get kids to school and activities.  With where we are at, Stacy and Sierra have to drive the kids everywhere.  At the RMH, Lindsey can ride her bike, Hunter can ride the bus and they are close to the hospital for blood draws and appointments.  With Stacy being there by herself and caring for Gage, that is a big deal.

Gage really is doing well.  I was comparing pictures from him now to a year ago.  A year ago he went in for surgery for his upgraded pacemaker and defibrillator. He looked so frail and weak compared to his condition now.  Now he is more filled out, has more energy and excited to go to school.

Regarding the Man-of-Steel, Gage Aurelius, according to our records he has been on the list since November 10, 2015, or 283 days, or 9 months and 8 days (but who’s counting).  Having said that, I do need some clarification regarding the time he spent as an inactive ‘Status 7’.  This was the approximately 3 months we spent recovering from the HeartWare placement.  We have received some conflicting reports regarding his true wait time as a status 1A.  It would seem to us that if he was a status 1A before the HeartWare placement, then placed on Status 7 for 3 months to recover, then back as status 1A, that he wouldn’t lose his place in line as a status 1A for those 3 months.  I know that it is not a ‘line’, we have to match blood type, antibodies, and size, it will happen when it happens. I get all that.  I just want some clarification.   Some of the medical staff have suggested he has only been waiting as Status 1A since February. I will let you know as I find out.

That’s it for now.  Getting ready to land.  Till next time, Jason

 Here are come cute pictures from a month ago.

Took Hunter out ground squirrel hunting back in July up by the Dish....... just kidding, this is back home in Oregon.   First shot, standing, with a peep sight!  How can he top that?

NO WAY can we get away with this at the Dish, but in Oregon, squirrels ruin our fields.

Back to School

Sierra has done a lot better on this new medicine.  Her stomach hasn't hurt at all and her white count is steadily climbing.  It was above 2400 Friday.  Just to make things clear, when I said she was able to go home, I meant our home in California, NOT home home (Oregon).  Tuesday was a little bit of a rough day for me.  Sierra had a band camp she attended all day.  At the end of the day, they performed for the parents and then had a parent meeting following the performance.  As I sat in this meeting with ALL of these parents, talking about volunteer opportunities and all the exciting stuff for band, I just felt this wave of heavy emotion swarm over me.  I love to help out in my kids' classrooms, volunteer to drive, chaperone field trips, and be involved.  This heaviness came from a couple sources.  First, I am tired of feeling like we are only half here.  By that I mean, we can only give a part of ourselves to help out.  I can never volunteer and help out as much as I really want to.  I have to depend on other parents to get my kids to games at school, practises and other activities that we would normally do at home.  Here in California, there is always a tie down with one of our kids, so I can only be "half here." Second, I can't believe I have to ask my kids to start another school year here.  NOT that this isn't a great place, it really is wonderful.  It's just, it isn't our home with our small school and friends they grew up with.  They have some really great friends here in California and for that we are truly blessed and was the selling factor on them staying here and going to school.  We have asked them for 3 separate school years to leave their friends in Oregon and join us here in California.  Each time they leave their friends in Oregon, come here and strive their best to find their place and friends here.  Then we head back to Oregon and their friends there have moved on to other friends,  Again, they have to strive to find their place and fit in.  I know we are making the right decision having them here in California, I just felt so bad for them and what "waiting for a heart transplant" means for everyone.  I thought for sure we would only have to ask them to do the last half of last school year.

I was really feeling down, and was talking with Jason one night on the phone.  He could sense my frustration and decided to fly down and surprise me.  He and Megan flew down on Thursday morning and was able to stay until Sunday morning. What a wonderful husband I have! I really miss him.  It was so great to all be together as a family, it was certainly not long enough, but they had to get back to Oregon.  This trip here we were able to make some decisions and help give each other pep talks, so we are now ready for school to start.  Here is the layout of how this school year will work.  Sierra will be a Junior at  Paly High School, she is really nervous for her Junior year.  Mostly from all the horror stories everyone tells her about how she has to grow up now and look at her future.  She would love to stay young.  Megan will be at home in Oregon.  We will really miss her here, but we felt that this was really important to her and so we support her in this decision.  Lindsey will be in 7th grade at Jordan.  Her good friend she made last year will not be in the same classes as her, but they have plans to meet for lunch and brunch.  A good opportunity for Lindsey to practice meeting more people.  Hunter is very excited to start his 5th grade year at Nixon, where he gets to start playing the cello.  We picked up his instrument last week, so he has had it out playing on it a couple times.  I have to discipline myself not to take it from him and start playing on it myself.

So, here is the most exciting part (well it's all exciting, but maybe unexpected is better).  When I started figuring out the kids' schedule and when I had to be, to pick them up from school, I realized that Gage would only get 3 hours of school a day at the hospital school.  The thought occurred to me to have him go to regular school, he certainly has the energy for it.  Long story short and many phone calls later, Gage will be attending Nixon Elementary (where Hunter goes) in the 2nd grade class.  I have been hired as the nurse to sit with him in his class all day.  They will hire another nurse to take my place, I was just the quickest and most available one they could find, with all this coming together last week.  I would LOVE to stay on and just have it be me, but the district said there is a conflict with it being the parent.  So, I will be the "sub-nurse" and if the nurse they hire has to be gone, I will cover.  We feel he is doing so well on this device and we wanted to test the theory that, "they can live close to normal lives." Gage is nervous about the kids staring at him with his feeding tube, but it will only be the first couple days.  He handled it so beautifully today.  He and I met with his new teacher and the principal.  As we were leaving a girl that will be in his class came in.  Her and her brother were staring at Gage and the boy finally asked, "What is that thing coming out of his nose?" Everyone in the room looked at Gage, and he said, "Well I don't eat enough, so this tube goes in my nose and down the back of my throat and into my stomach.  And then, at night when I am sleeping, it feeds me."  He has SO GOT THIS!! I left a very proud mama.  First day of school pictures to follow next time.

Everyone together at the Oakland temple. 

Gage has lost 2 teeth and is very excited to cash in on his tooth fairy money. He has one more loose tooth that I told him he had to have out before he can get his transplant.  He is slowly working on it.

My cute boys overlooking Oakland. 

On Saturday, the 3 girls went on a river rafting trip.  So, Jason and I decided to take the boys to the Tech Museum in San Jose.  They had a great time.  Below are all the picture from there.

Heading Home

Sierra's white count were up to 1650! They are going to let her go home today.  This is great news, I think we were all going to go crazy with one more day in the hospital on isolation.  I don't know how you do it Owen.  The doctors switched around some of Sierra's meds.  They took her off of Cellcept and put her on another form of it called Myfortic, it is the same thing just a little gentler on the stomach.  She is still having some stomach pain and her appetite isn't 100%. but she is feeling a little better with no fevers for 3 days now.  With her white count up, she can finally fight off this virus.  She was scheduled to work a few days this week, today and tomorrow.  She has had to call in sick for 3 shifts now.  She is pretty antsy to get out so she can make it to work today.  Blood draw next week and clinic for Gage.  Hopefully a quiet rest of a weekend.

Quick Update on Sierra

Yes, Sierra is still in the hospital.  She has finally been without a fever for 24 hours now.  She continues to have the stomach pain, it seems to come with eating.  So far, all her labs have come back negative for any type of bacteria.  Tomorrow the final results should be in.  The doctors have tested her Cellcept level.  This is an immunosuppressive drug that she has been on for over a year.  Back in April or May, when she received a 1B on one of her biopsies, they doubled the dose of this medicine.  It seemed to help, but knocked her white count down a little.  They  have tampered with some other meds to counteract that effect.  It was working, but maybe not enough.  With her white count so low, she is having a hard time fighting whatever this is.  One thought is the possibility of the Cellcept being toxic, even though her levels were fine.  They have seen this in some patients, but they haven't talked about testing for it.  To test for Cellcept toxicity requires a scope into her stomach and take a small biopsy to test the tissue.  Not sounding like a lot of fun.

So, for now, the goal is to get her white count back up (which it is slowly coming up), keep her on IV antibiotics to keep her covered until the count is up.  Once the labs come back, they will see where they want to go from there.  Hopefully out tomorrow, but it could be Saturday.

In the meantime, we are working to get Gage registered here for regular school.  His VAD is working so well, that there is no reason he couldn't go to a regular day of school.  More to come as we are working on that.

Lots of Fun with Cousins, now Time to "Hang Out"

It has been awhile since we have blogged, only because we have been with family having a lot of fun.  On the 21st of July, Gage was discharged from the hospital.  At the same time, my mom, 2 sisters and 4 nephews were heading here to spend the weekend.  They made it to the house 20 minutes ahead of us, but the partying started and didn't end.  We were able to go to San Francisco, and play a lot at the Van Elderen's house.  We attempted to go to Santa Cruz, but after being in traffic for an hour and only moving a mile we turned around and decided it would be funner to play in the pool.  My brother Cory and his family joined us Saturday night and the fun continued adding 4 more cousins.  Monday morning, my mom and sisters left, but my brother Cory stayed until Wednesday morning, allowing us an opportunity to make it to Santa Cruz without traffic.  Jason flew home Monday afternoon to get some ranch work done.  On Friday, the 29th, Jason returned with 2 nieces and his parents.  His sister and their adorable little family came. Along with his brother and their family.  Gage had been waiting for a LONG time for this reunion, as his favorite cousins Range and Lyndi were coming. The reunion of the 3 of them was so sweet and priceless.  Gage hugged and hugged Range.  Range even said, "Wow, that is quite a hug."  With the Bingham crew, we were able to go to the beach and see whales and look at the tide pools.  So much fun with everyone it was so sad when everyone left.  A SPECIAL thanks to Judi and Dan, who without them allowing us to stay at their house, these reunions would not have been possible.  

Megan held a child day care camp the week in between the Merrill and the Bingham reunion.  Lots of work, but was happy with the profits from it.  Jason and I planned out the summer back in the beginning of June.  What camps kids had when, when kids should go home to Oregon or be here in California.  Every event planned up to this weekend.  Hoping somewhere in there a transplant would happen.  Now, we are 2 weeks from school starting here in California, no transplant and have no clue what the "right" thing is to do.  Do the kids keep going to school here in California? Do they go back home in Oregon and start school there?  Even if Gage received his transplant today, he would have 3 months post transplant before we could go home.  Megan is adamantly requesting to go to Oregon, as this year in volleyball, she would be on the varsity team and they have a really good team.  3-4  are seniors and will be graduating.  This will be her "last" chance to play with these girls.  So, as of now, we are sending Megan back home to go to school in Oregon and the rest of the kids will continue here in California.  When Jason and Megan left on Monday morning, it was a really hard good bye.  Lots of tears were shed by all of us.  We've always known the next time he would be back.  With Megan in Oregon and games every weekend, we have no idea when we will be back together again.  We sure thought Gage would have had a transplant by now, but not yet.  Nothing set in stone yet, just trying to figure what is best for our kids.

Saturday, while all the Bingham's were here, Sierra had to go to work.  When she came home, that afternoon, she said she felt pretty "cruddy." She had been complaining of an upset stomach for a couple days, but said it felt better with milk.  She had a fever of 101.5.  I had her take some Tylenol and go to bed.  She didn't feel much better the next day and her fevers continued to go up and down all day.  Never going over 101. Monday, after everyone left, I called the transplant team to let them know that I was going to wait to have one of her labs drawn because she's had fevers and I knew they wouldn't be accurate.  When I told them what was going on, they wanted to see her right away.  SO, after an echo, chest x-ray, labs and a visit with the doctors, they let us go home.  They called me this morning and she still had a low grade fever of 99.8. Her stomach was still hurting, so they wanted to admit her, because her white count was 40 (which normal is in the thousands).  This would be the level for a child receiving chemo for cancer.  This had them very concerned and wanted to admit her to place her on IV antibiotics and give her medicine to help her white counts come up.  They said to plan on a couple days.  So, we will sit and "veg" with Sierra in her hospital room.  Hoping this admission is ONLY a couple of days. How blessed we are that even though we are here waiting for Gage's heart, he is NOT in the hospital and we could spend this time with family guilt free and him with us.

Sierra being admitted to 3 West today. 

My mom and sisters and I at Ghirardelli. 

The cousins at Ghirardelli and the Warf.

Fun in the pool.

All the "Merrill" cousins together during and after swimming.  Love my family!  Missed you Ryan, Bradey and Tiffany. 

Stephanie, Brindee, Lindsey and Sierra at Santa Cruz. 

 Broadee, Lindsey, Hunter and Gage at Ghirardelli square.

In-N-Out on the Warf in San Francisco.

Gage holding his new cousin Ty. 

Gage with his "death grip hug" on his cousin Range.  A very sweet reunion. 

Fun at Fitzgerald  Marine Reserve. 

A fun family game of water basketball..  Only 2 black eyes and a sprained finger.  Not bad.

Celebrated Megan's #15 birthday with everyone here.  Even a fun visit from the Thomas's for Tristens biopsy. So fun to see them.