A Little to Smooth for Too Long

 It has been awhile since we have updated, which means things are going really well.  With all the trials and frustrations of Covid, I feel our family has had many blessings due to this pandemic.  Sierra was married to a wonderful guy named Mason in October.  Something we weren't sure we would have seen 4 years prior.  She is happy and doing well and has switched to the adult side at the University of Utah.  It was a bitter sweet good-bye to Lucile Packard for her.  

Megan is serving a mission for our church in San Antonio, TX.  She is speaking Spanish and having some wonderful and fulfilling experiences. We are very proud of her and all she is doing.

Hunter and Gage are home with dad and doing great.

It has been at least 3 years since any of our kids have been life flighted to California. They have all been doing well.  It has been really nice to only have to worry about "normal" issues with our kids rather than health issues.  We have definitely felt very blessed! 

However, as always, all good things must come to an end. Monday evening Lindsey was complaining that her heart was beating a little slow.  I took her pulse and it was in the 40's.  I thought it strange and decided to wait and see how she felt the next day.  She didn't say anything about it yesterday morning, so I figured it must have subsided.  Long story short, it didn't subside and she started feeling dizzy while in her weight lifting class.  California had us go to the ER and found quickly that she was in a 2 to 1 heart block.  Meaning, for every two of her upper chamber heart beats, only one is going to her ventricle. The last time she had this was in July of 2019, after a biopsy the doctor bumped her AV node and placed her into the same heart block, that resolved on it's own. She has remained in heart block and does not look like it will resolve.

Right now the doctors are trying to rule out causes of the block.  They are starting with the easiest to treat, rejection.  Today they will take Lindsey and do a biopsy and look for rejection and coronary artery disease (CAD - the cursed word we do not like, this is what Sierra had that lead her to her 2nd transplant).  They will have some idea right after the biopsy on the coronary arteries and pressures, but will not have the official result of the biopsy until tomorrow.  After they get the results, they are sounding more and more like they will place a permanent pacemaker.  This will help if she keeps going into these episodes, she will have a back up.  The doctors are just trying to decide if they will place a defibrillator with it or just the pacemaker.  They keep alluding to her being eight years post transplant and most transplants last nine.  Right now there are not a lot of answers, but they will slowly come as we keep ruling out causes.  Lindsey is acting great and being a typical teenager.  A little different than when she was here 8 years ago.  Her phone seems to pacify her much better than her mother's attention.

We really have been so blessed for so long.  This is just another hiccup in the road.  Will keep you posted as we receive more answers.

Lindsey ready to leave on life flight.

A special gift from a special friend.

Lindsey's last time having school with Kevin as he will retire in 11 days.  

Let them play!

As parents of three healthy (and dramatic) transplant children we feel we have earned the right to express an opinion about how we as a society and government are reacting to the threat of Covid-19.

After our kids received their heart transplants and they were stable enough to return to our home in Eastern Oregon we first had deep and lengthy conversations with our children’s heart doctors, social workers, and other care givers.   We asked how we should act, where we should move, and what our kids can do with a life time of immunosuppressant drugs and a transplanted heart.   At first we thought we would need to ‘constantly’ sanitize our kids and keep them sheltered from the outside elements.  We saw a world of protecting and harboring them from infection and sickness.  To protect them at all costs, we thought our kids would (or should) wear a mask to school or be home schooled. However, with the advice and council of trusted local and Stanford medical professionals, we made a very conscious decision to let our kids live their lives.

We have a responsibility to protect our children, but we also want them to experience their childhood.  We wanted them to participate in school, play sports, go on wilderness backpacking trips, attend church missions, and experience new places.  With their immuno suppressed systems, we could limit what they do and where they go, but we still want them to experience life.  These kids are only ‘kids’ for a few short years.  Stacy and I made that decision, and continue to hold to it.

This is how Stacy and I feel about this whole government shut down thing.  It’s impossible for the government to totally protect us.  Our kids need to be able to experience there childhood and these once in a life time opportunities.  Yes there is a risk, life is a risk, but it should be something we as individuals make a conscious decision on.  The fact that the Government ‘forces’ us and makes ‘our’ decisions is wrong.  Just like Stacy and I made a conscious and educated decision regarding the health and activity of our heart transplant children, we as parents and a society can make our own conscious and educated decision regarding our health.

If we feel we are at risk, or that our children are at risk, then we can make the necessary steps to protect us and them.  We can mask up, keep them home from school, church and other activities, and take other steps as we fill necessary.  If we are at risk, then we need to protect ourselves.  But WE should be able to make that decision, NOT the government.  We know the risks just like Stacy and I know the risks of our transplant kids. We made the decision that we want our children to experience life.  We want them to experience school, friends, dances, sports, church, missions, summer camps, all-star games (Roper), college life, weddings, and other once in a life time activities.  The risk of Corona or other diseases will always be there AND we accept that risk and consequences.  We know what it takes to protect ourselves, and we should be able to make that decision ourselves.    If our kids get sick, we acknowledge and accept the responsibility, but that is our decision.

This country was founded on the principles of freedom; freedom to act and live, and ultimately accept responsibility for those actions.   We hope our government, schools, churches, sports organizations, and other activities open back up.  Allow our children to live, experience and learn!  Limiting the kids is not right!   We know the risks, we accept them, so let us move on!

Having said that......, here's a brief update on the crew.....

Well its been over 7 months since an update.  So much has changed in our lives as has yours I am sure.   In all this craziness, I am happy to report our kids are doing great!  They have all had checkups in the last couple of months and they are sitting with ZERO rejection and great heart function.

Sierra served a mission for the church until Corona hit.  Unfortunately, she was released after only five and a half months.  She had originally signed up for 18 months of service.  She is now home, taking online classes from BYU-I and dating this critter named Mason (stand by for that one).

Lindsey Lou’s heart is also doing great.  She has biopsies only ONCE a year.  She is home, working at a pizza joint, and looking forward to school, friends and volleyball.

Gage Aurelius is also doing awesome and looking forward to returning to school as a 6^th grader and playing whatever sports he can.

Megan is in Logan somewhere going to USU and working 2 jobs.   Hunter is growing like a bull thistle and is looking forward to his freshman year,  football (maybe?) basketball, a 30 mile hike next weeks, and seeing his friends.

November update and Good Times

So it's been over 3 months. Probably time for an update.

Seems like the only time I have to update is when one of the kids is in Calif for a heart checkup or biopsy.  Well today, Gage had his scheduled and planned 3 month biopsy.  Nothing to report there, (which is great)!  Heart pressures look good and will get rejection results tomorrow.  Lindsey and Hunter also came with us, but no checkups for them. Lindsey only gets biopsy's once a year!
There has been NOTHING to report for any of our heart kids for the last 2+ years, thus the reason for the lack of blog updates.

In other news (if you feel like reading on) life keeps movin' forward:

Sierra is on a full time mission for the church.  Because of her obvious health condition, she was assigned to the San Jose mission.  She was originally assigned to the South Carolina mission, but her dear ole' dad spoiled the fun and called Salt Lake to make sure they had read ALL the medical notes in her file.  After further review and understanding of her file, they reassigned her here to Calif so she can be close to her medical team for checkups, and any other unlikely events.  All reports say she is doing great.  We haven't seen her on this trip, she is currently servicing south of San Jose.

Megan is lovin' it at Utah State. She seems to really be jumping in to the college life.

Lindsey Lou is now the oldest and 'most mature' in your house.  She is embracing the teenage years with all it's drama.

Hunter is in 8th grade and is also learning much about early teenage drama.  I am coaching his junior high basketball team.  We have 28 kids out for basketball.  For me, that is a LOT for an A team and B team.  Some of the kids are there to get out of PE, others are there for the love of the game.  Hunter said the only way I could make the practices any more difficult is if I personally insulted the kids individually in front of the team.  I haven't done that, but do work them pretty hard.  I am actually really enjoying coaching the kids

In mid-August, we went on a challenging but dang fun family backpacking trip up into the Eagle Cap Wilderness.  That was the first time we have been able to do something like that.  Our kids loved it!! We hiked to Traverse Lake then up to Wonker Pass.  We wanted to do this before our older girls went off to college and mission, and while Gage is healthy enough to complete a 'real' hike.  This trip was no joke one the best things we have done as a family.  They liked this trip better than other vacations we had been on.  There is something to be said about 'doing hard things'.  I believe kids need these kind of experiences and learn to do hard things.

That's it for now. Once Gage is done here at the hospital, we are hitting the road for Oregon.

Till next time
Jason

Elk huntin boys

Aggie football game against BYU.  

Sierra's MTC companion is serving in Palo Alto.  Fun to see her and hear how she is doing 

 Our girls before college and mission.