Day 600, June 29, and Heading Home

Figured it was about time ole Uncle Jason did an update.....providing Stacy is on the road and headin' home!!  Gage got a big fat ZERO, so they made a run for it.  We are all so excited to have them home (or at least on the road).

Frankly, it's been a long week for the kids here on the ranch.  I have been working late nights baling hay and up early irrigating, not to mention the office tax work I am doing.  Kids would really like to have their mother home so they don't have to clean up after themselves or cook their own meals.  It has been really good for them to see just how much their mother actually does for them.  Hopefully this will be a good lesson.

Stacy and I have both felt a bit sad for leaving California.  This is an emotion I was not expecting.  As excited as we are to be home and reboot our lives, we are leaving a huge network of wonderful people in California.  Yes we will be back, many many times we will be back, but hopefully they will be visits, not for years at a whack.   Anyway, we are just a little sad to be leaving such good and often challenging memories.  But we will be back.... in 3 weeks to be exact.

Hey, guess who just walked in my office here in Oregon.  After 12 hours, Gage Aurelius just walked in.    Time to go... till next time (at there will be)

Jason

Last Monthly Biopsy

So, after my last post, I sat here and fretted for 2 days.  Not feeling great about heading home for a week.  Then, on Sunday morning, I decided I would pack for only a couple days.  If it still didn't feel great, I would not go.  I think going more short term gave me a better peace of mind.  Sierra, Gage and I loaded up and headed home to Oregon.  We made it home in time to spend the evening of Father's Day with Jason and most of his family.  It was REALLY nice to be home and together.    It was a good time to return home, as some of the kids were having meltdowns.  The weight of us being apart and single parent families is beginning to take its toll.  Again brief, but enough to reset and get strength to finish off this last week for everyone.

Gage and I drove back on Thursday, in time for his clinic on Friday.  There really are no changes they made.  Everything has seemed really stable.  IF his biopsy is a zero or 1A tomorrow, we have been given the okay to return home for good! Who knows how long that will last, but we will soak in every minute of it. In the meantime, we have been finding ways to keep busy.  Gage went with one of his good friends, Efraim, from the RMH to a trampoline park.  We all had a great time! He jumped and rock climbed and enjoyed those activities he wasn't able to do on a VAD.  Thanks for going with us Melissa and Efraim!

Sierra's halter monitor came back looking completely normal.  So far, all of the tests they performed have come back normal.  I asked Sierra if she thought it was because of stress and some anxiety.  She simply replied, "what am I stressed about?" Okay, then I guess it isn't stress.  She is so funny,  I would love to see the world through her eyes.  The plan for now, is for Sierra to keep a journal and see if there is a pattern to activities she is doing, stuff she is eating or what exactly is causing the chest pain. They have dulled a little in their intensity and she is not having them every day.  So that is encouraging.  

I will update with Gage's results later.  Wish us luck, here is to finally going home for good!!

 

Biopsy Results and Going Home

Drum roll please, biopsy results are in and .................. Sierra finally received a 0 (yayyyy) and Gage received a 1A (which is considered a 0).  All good we will gladly take those results.  On Thursday, we asked the doctors again if we could go home since Gage is doing so well and his biopsy results were good.  Our wonderful Dr. Rosenthal called us himself (which is usually not for the reason your wanting) to tell us his concern with Gage leaving before his 3 month mark.  It was not what we wanted to hear, but after talking with him I couldn't shake the uneasy feeling I had inside.  After lengthy discussion with Jason and trying to decide what to do, I decided to sleep on it.  I woke up early this morning and packed up our Ronald McDonald room and put everything by the door.  I decided if it was the right thing to do, I would know after Gage's clinic appointment this morning.  After talking again with a different doctor today, the uneasy feeling wouldn't go away and I just couldn't put our stuff in the car and hit the road.  As badly as I wanted to go home, I know the doctors have Gage's best interest at heart.   Their concern was a rejection that can happen without symptoms and suddenly.  They have seen it in patients usually within the first 3 months of transplant and their biopsies, labs and echo look great one day and a couple days later the kids come into the ER and are placed on ECHMO.  Our hospital is not equipped to place him on ECHMO.  With his severe reaction to his first rejection they are all nervous for him to be too far away.  Lots of kids get 3A rejections, but rarely to they have to go on dialysis like Gage did.  So, I really couldn't argue with them.  Our stuff still sits packed by the door and I haven't felt motivated to unpack.

I know, we are only 2 weeks away, what is the big deal? We are starting our 3rd summer here.  Our 3rd summer apart as a family, a 3rd summer of restricting our trips to a 2 hour travel radius from Stanford. A 3rd summer of keeping our home in Oregon going and supporting kids in California. I don't know how many of you that read this have children, or possibly understand what I am beginning to understand, that the time with them is so short.  Sierra will be a Senior this year in high school.  Our opportunities to spend summers camping, Bar-B-Qing and family trips while our kids are young and at home are coming to an end.  It makes me almost desperate to spend any window of opportunity that we have, together and making some kind of fun memory.  Not to mention the uneasy feeling that accompanies that time that we are home.  The questionable feeling of how long will this last?  How long until there is a problem with one of the kids and we have to go back?

The question was asked why we don't move to California?  That is a great question.  When Lindsey was diagnosed and we were told there were more transplants than just Lindsey in our future, we asked the doctors if we should move.  He assured us that we didn't need to and these things could be cared for from a distance.  For one thing, the cost of living is so outrageous here, who could afford it.  The most important thing however, is we LOVE where we live, we love the lifestyle we have chosen to raise our kids in.  We love the community and family and the wide open beauty that surrounds us.   We have asked ourselves multiple times if we should move, but it has never felt like the right thing to do.

Sierra is still having her chest pain. It comes on 1-2 times per day.  Sometimes it really hurts like a sharp pain and other times it is dull.  Her echo looked fine, they did blood work to check the gallbladder and liver and those were fine.  She also had a chest x-ray done and it looked normal.  The plan for her now is to keep a journal of when the pain hits, how long it lasts and see if they can find some sort of pattern. She is free to return home, so we will have to figure out how to get her there.

Had the fun privilege of going to lunch with our favorite Mrs. B.  Gage was loving his pepperoni pizza!

Update June 14

8:00 am.
I apologize for the long overdue update.  There hasn't been much to update.  Jason had a busy week with the kids that were home in Oregon.  Trying to get the house semi organized, or at least piles in one room instead of the whole house.  Jason continuing to catch up with office work and keeping the water going on the ranch and throwing some fun activities in there as well.  Gage, Lindsey and I had a pretty quiet week here in California.  Lindsey was able to go on a camping trip to Angel Island with her good friend Kirtana.  Friday Gage had clinic.  His echo looked great and his labs are stable and heading in the right direction.  It was a great clinic appointment.  Gage has been acting like his old self with pletty of energy.  He attended the Ronald McDonald summer camp and has had a great time playing with his friends from the RMH. Wednesday last week I went on a field trip with him to Jasper Ridge Farm.  It was a lot of fun.

Saturday, my niece was married in Utah.  We asked the doctors for permission to go, but they did not feel comfortable with him leaving the area, even for a few days.  But, we were told they won't force us to stay here.  Sooo, after Gages good clinic appointment, we made the decision to take him and head to Utah, feeling completely confident he would be fine.  He has been doing so great and there were no lab draws needed or anything  until his biopsy today (June 14).

Lindsey, Gage and I left Friday after his appointment and drove to Utah and Jason left Oregon with Megan, Sierra, Hunter and Jules (Hunter's friend) and met us there.  For the first time in months we were all together as a family and to top it off, I was able to be with 5 out of 6 of my siblings and their families.   It was such a wonderful and relaxing weekend.  Jason and I even snuck off to the Anniversary Inn for our anniversary Monday night (thank you Garrity).  Gage did great and was happy and energetic the whole time.  Tuesday morning Gage, Sierra, Jules and I headed on the long drive back to California.  Jason headed back to Oregon with Megan, Hunter and Lindsey. Sad to have to be apart again, but the time when we can be together for good is very close.

Very nervous for Gage today.  He is currently in cath lab doing his first biopsy awake.  To say that he is nervous would be an understatement. He is the youngest to be doing biopsies without anesthesia.  I have offered him a big prize if he will do at least 4 in a row without anesthesia.  He is leaning towards a new bike, but hasn't made his mind up for certain yet.  One might ask, "Why on earth can't he keep doing them with anesthesia?" Biopsies that have anesthesia recover in the ground floor PACU, biopsies without anesthesia recover on the first floor Short Stay unit.  Since his sisters do theirs without anesthesia and they will be doing them at the same time for scheduling purposes, and I can't be two places at once, he is going to have to do them without anesthesia as well.  After the 4th biopsy awake, he will not be as nervous, since he will know what to expect.  Then he will be as "biopsy brave" as his sisters are.

Sierra has biopsy today as well, just to follow up with her continued 1B biopsies (grrrrrr).  Her chest pain has continued (more grrrrrr), the doctors ordered an echo for her before biopsy today.  Some have suggested it might be an issue with the gallbladder.  I will certainly bring that up with the doctors today, thank you.

IF both biopsies look good and Gage's labs continue to be stable, there is a very good chance we can be released to go home after his clinic this Friday.  Of course, we won't know biopsy results until tomorrow, but if all is well, there better be a dang good reason to keep us here.  If we do get to go home, Gage and I will return the following week for his clinic on Friday the 23rd.  We will enjoy 5 wonderful days at home, then return to California, BUT we can return back home right after the appointment. We are getting really close, I can almost feel it.

11:30 AM
Gage did awesome on his biopsy.  The doctors and nurses were pleasantly surprised.  He nailed it and as they were taking him out of the cath lab he asked, "When do we get to do this again."  Very proud of him.  Both Sierra and Gage had the exact same heart pressures (weird) they were both 4 and 7.  Again, you want these below 10, so these are great numbers.  Rejection results to follow tomorrow.

On our way to Jasper Ridge Farm 

 Most of the cousins hanging out at the park.  Below is some fun costume dance parties we had (thank you Jenn).

Jason even participated.

14 kids out on the trampoline.  There somewhere in that mass pile of blankets. 

 Gage heading in for biopsy with one of our favorite nurse practitioners, Bambi.

 Reunion fun

Time for Reflection

Quick update on Sierra.  She had clinic on Friday, the doctors ordered an echo, EKG and placed a halter monitor on her.  The echo looked great and the EKG looked normal, all good news.  She is still having the chest pain, but not as frequently and it radiates across her chest instead of one distinct spot.  Not sure if that is good or not, we will see what the halter monitor shows.  She seems to be asymptomatic to anything and finished her SAT and all her finals this week.  She worked her last shift at Tin Pot Creamery on Saturday night.  This morning she left with Jason, Hunter and Hunter's really good friend Jules, to head back to Oregon. Jules went to Oregon once before, but it was in February and cold.  Now there will be more for him to see and do and help Hunter ease into his transition of being home. He is a very dear friend.

Friday was our first day of summer and probably the busiest day to start vacation out with.  The morning started off with Sierra's appointment.  Both Gage and her had blood draws before the appointment, meanwhile, Jason was flying in from Oregon.  Jason had an 11:00 appointment for an echocardiogram.  I had an echocardiogram and exercise test done on Tuesday.  After Sierra's appointment and Jason's echo, we met up for lunch.  We then had an appointment to meet with the adult cardiologist, Dr. Ashley, to talk about the results of Jason and I's test results.  There was a little detail in each one that is very small and not serious.  Jason's heart size was measured 5.6-5.7.  Normal is less than 5.5.  So, it is a little bit dilated, but they don't know if it is just from a little stress, but they don't get excited until it is in the 6.0 range.  Again, NOT a major concern! My echo showed a leaky valve causing a slight murmur, but not concerning.  My exercise test results showed I was 147% of normal (that is really good I guess), the doctor kept asking if I was a competitive runner.  I guess I have no excuses now.  Final summary was, these are both really minute things, but the question being if these added together make a bigger problem with our kids.  We will re-echo in 2 years just to make sure that nothing has worsened.  That gives Jason 2 years to get ready for his exercise test to see if he can beat my score 😊.

After our appointment with the adult cardiologist, Gage had an appointment to see his old (originally born with) heart.  It was a really neat experience and interesting to see all the devices that were used to keep his heart going.  Devices like the HeartWare, pace maker wires and defibrillator.  Thank goodness for modern medicine.  Be prepared for some gruesome pictures of his heart below.   It was interesting to see his reaction to seeing it.  At first he didn't want to touch it or hold it.  After Hunter took over looking at the anatomy, Gage decided it wouldn't be so bad after all.  He held it for a minute and then was done.  Jason, Hunter and I were all very intrigued with all of it, it was so good to see it and made us appreciate Gage still being with us.

After a long day at the hospital, we returned to the RMH and received a tour of the old, newly remodeled, RMH.  On Saturday we moved back into our old room #204, but now it is #1202.  It was nice to have a lot more space and a little more privacy for everyone.  As we were packing up and moving, we loaded up the suburban with items we no longer needed and sent home with Jason.  This was in hopes that we can go home soon.

As we were packing up and moving to our new, old room,  Jason and I couldn't help but reflect on our past 2 years here.  The school experiences the kids had, the friends they made, the awesome community we became a part of through sports or interactions at school and church, Hunter's basketball and baseball, Gage's baseball, summer camps,  volleyball, band, first jobs, different places we were able to visit, family that was able to come and people we met at the hospital and RMH.  It is always interesting to me, when we are in the lull of waiting time seems to drag on, when it is over you realize what a sentimental experience you had.  It reminds me a lot of the "Footsteps in the Sand" poem, where we look back and see where God carried us through.  People he placed in our paths to help us and relationships that were made.  Experiences that helped the children and Jason and I grow.  It is a bitter-sweet to leave.  We have made so many dear friends and we hate to leave them, yet we are so excited to finally be able to go to our home.

We will have another adjusting period when we get home.  Adjusting to actually ALL being together, rekindling friendships and figuring out where the kids fit in with their old friends, and juggling now 3 transplanted kids instead of 2. But, we will savor every moment of it and enjoy it for as long or as short as it lasts, because who knows what our future holds.

Lindsey and her really good friends Keira and Kirtana.  She will miss them! 

Above is a picture of Gage's old heart on Friday.  Pathology has sliced it and removed parts of it for testing.  The wires on the green cloth are Gage's pacer wires and his defibrillator.  Below, is a screen shot of Gage's old heart coming out during transplant. 

Had a fabulous evening with Mr. and Mrs. Blazinsky.  Gage helped mash the potatoes.  Such wonderful friends.

 Gage and his adorable monkey face.