April 22 2015 , long overdue update

Wow....

Sorry I haven’t posted for over 2 MONTHS, but it’s was tax season and I was (and still am) incredibly busy, so deal with it :)  During tax season my life has been pretty basic, work, sleep, back to work.  Stacy and the kids on the other hand have been going full bore.

To update on Sierra, she was officially put on the transplant list March 24.  She looks and acts exactly the same as she did a month ago.  I wish we could get her to exercise more, but she just has no desire. This is directly related to her weakening heart mixed with a little easy going attitude.  They have had to increase her meds quite a bit in an attempt to support the weakening heart.  We have the same worries and concerns, but basically it has been a good couple of months.

Sierra had a checkup in Calif.  Given her heart and kidney functions, they told us to plan for more than a 'quick trip'.  After the echo this morning, they have admitted her to 3 West for observation.  Her weight is trending up, kidney function is stressed, and she has had some dizzy spells (2-4 times a day).  So they want to put her on the monitor and watch her close for a couple of days.  Rosenthal said that even though she looks and acts great, that can be diseaving. He does NOT like how she is trending, and he wants to get a closer look at the situation.  That is all we really know for now.  I am here in Oregon with all the kids and Stacy is on 3 West with Sierra.  

In other news.... 

Lindsey, Hunter and Megan all had good basketball seasons and Sierra did well in dancing.  Now it is on to baseball for the boys and club volleyball for Megan.

Couple of fun events we don’t want to forget.

Went to the last Aggie home game of the season.  The coach, Stew Morrill, was retiring so we went down for the game.  We had 22 people in our group, 16 of which were kids. We had our family, Jeff and Jenny Yeck and their 6 kids, and Troy and Sharon Kunzler and his 5.  Jeff, Troy and I were roommates during our college days. Things have surely changed since then.   We had to scalp tickets to get everyone it.  We all sat in the student section and had a great time.  Wild Bill was there dressed as a peacock, and the student section was rocking.  We need to do that more often.

Other activities (which I didn’t see or hardly knew about) include, Stacy and Lindsey speaking at the DMV on behalf of organ donation, Hunter’s Blue and Gold Cub Scout banquet, Megan and Lindsey’s talent show, and Megan’s club volleyball. 

Took another quick trip to Utah for Grandma and Grandpa Coleman’s  mission homecoming.  They went on an 18 month mission to Nebraska.  This was their homecoming talks in church.  Had great visits with all of stacy’s parents and siblings.

I got a new calling in the church to serve as 1st Councilor in the Bishopric with Tom Issacson as Bishop and Jake (my brother) as the 2nd Councilor.  Tonight I am off to LaGrande for training.  Kids are somewhere??

I will add pictuires when I get a bit more time.

Till next time, jason

Thursday Update, Meeting with Doctors

What a few days!  We are now driving through Nevada on our way home.  Yesterday (Wednesday), we had appointments with doctors and staff from 8:30 until about 4:00. Gage and Sierra both had echoes done. Gage received his pacemaker adjustment.  He now has his 24 hour halter monitor on to see if they have the adjustments correct. Pending no more issues, they will see him in June or July, depending on the other kids. 

Asked one of the questions I always dread with Gage. Is his Cardiomyopothy still progressing?  He is acting so well I just assume his heart is doing okay.  Dr. Rosenthal said that when he checked his echoes he is surprised NOT to see a normal heart. If fact, his echoes looks worse over the last 18 months. I was really hoping he was holding his own…but I guess not. There is nothing we are going to change with his regiment, checkups, meds, or supplements, just something we need to watch and prepare for.  No real timeline on if and when he will need a transplant.  Best thing we can do is keep pushing the calories, he is very thin for is age and height.

But that was not the main focus of our trip; that was more of a side note to the main events.  Had a LONG visit with Dr. Seth Hollander and Dr. Rosenthal about Sierra and here is where we are at. She has coronary artery disease and needs to go back on the transplant list.  The heart squeeze is okay, but it is not relaxing properly between beats. They can see this from the increased heart pressures during her biopsies.  Because of the many years of rejection, both cellular and antibody, the coronary arteries have begun to shrink which cause the increased heart pressures and stiffening. The coronary arteries are a part of the donor heart and are the arteries that wrap around and feed the heart. Right now they do not have good therapies to fix this problem, only retransplant.  They said this is common with transplant patients, especially those with a history of antibody and cellular rejection. Right now she does NOT have rejection, but the damage has been done.

Okay, so now what. She is acting great and the new med has pulled 15 pounds of water weight off.  They want to get her on the list now knowing the wait is well over a year.  The hope is she can wait at home and get life flighted to Calif when the ‘call’ comes. We have some homework to do regarding an air ambulance.  We need to be able to go from the ‘call’ to LPCH in about 3-4 hours, even though when we get there, she could wait another 12+ hours before surgery.  That is the best case scenario.

I asked the big boys about the worst case scenario, just to prepare myself.  They said the progress of the disease goes slow, then accelerates towards the end.  Basically the same way Sierra and Lindsey’s heart failure went years ago; starts slow, then crashes.  Then my next question was regarding VADS or other mechanical support (like the Berlin Heart) during the ‘crash’ period. They said as of now, they are NOT having good success with VADS, because the mechanical support assist with the squeeze of the heart NOT the relaxing.  Milrinone and other IV treatments have helped prolong the wait, but don’t count on the VADS.  Sooo, we do NOT have that crutch to lean on if/when the time comes.  

This brings us full circle.  The reason they want her on the list now, when she is feeling good and the large amount of meds are working, is to get her to transplant BEFORE she crashes.  If she crashes, and the meds are not working there is NO mechanical support to lean on. This means we lose her….

They showed us some statistics regarding transplants, about 70% survive, 30% don’t, mostly due to this coronary artery disease.   Nothing is guaranteed is it?

So now the wait begins, the doctors and other heart staff meet on Friday for the final determination and listing. She will be listed as a status 2, meaning low priority. We will ALWAYS have our phones with us with alternate numbers for grandparents, office, and other relatives.  If we travel, we will need to check with our air ambulance service, or be suspended from the list until we get back.  Most likely, we spend most of our vacations, holidays, and reunions in the good ole’ Baker valley area.

Sierra was there for all these conversations.  She says she is ready to face this head on.  She especially feels bad for Nicholas and his family.  She has felt an attachment to him for the gift he gave her.  She feels horrible or even guilty that her body has rejected his heart to the point of needing another transplant.  She wishes she could keep Nicholas’ heart, and thank him someday in the afterlife.  She has wept more about that, then anything else.  I sure love that child.

After our appointments, Stacy and I went to the RMH to talk about our day with Keith Morrison and the crew. They want to update our story on Dateline sometime in May, but this all depends on where ‘our’ story goes.

 Now here we are, somewhere still on Hwy 95 in Nevada. Gage and Sierra are doing homework. Garrity is driving, and Stacy is telling cool nursing stories. No one wants to hear my cool tax accounting stories, go figure. Our plan is to go back to normal life, school, church, work, basketball, dancing, and everything else that goes with raising 5 kids. I fully believe we will be able to wait in Oregon the entire time. Stacy believes it won’t be that easy, and complications will evolve.  Who knows, maybe Gage and Sierra will someday be waiting side-by-side in the hospital. If it comes to that, we will deal with it.  

Thanks Garrity and John for tagging along.  They were great to travel with and help with the kids.

We had lunch with Kade and Stephanie Thomas from Adrian.  He as quit his job back home and has move to Calif with this family. He will work for an electric motor shop in the bay area as they continue to wait for Tristin’s transplant. They have been waiting since September and are doing well.

We saw Dr Axelrod in the hall way. He wanted to know how Axelrod, our dog is doing. I gave him a good report on the family dog. 

Happier and shorter posts in the future, but for now, I needed to get this off my chest before I head to the office.

By the way, happy 2 year anniversary Lindsey, today 2 years ago we waited to go into surgery. She is doing great.

Dr Axelrod and Dr. Wright swinging by to say hi. 

   Blood draws needed. 

Hours before going in 2 years ago

Hours after surgery 2 years ago.

On our way

It’s Tuesday and we are on our way to Stanford. With the four of us going, we decided to take Big Red, our suburban. Right now Sierra is driving; she is 15 and has her permit!  Look out Calif drivers!  Stacy is in the passenger seat keeping her between the lines and Gage and I are in the back chillin’ out.

Calif sent us the addenda for tomorrow:  8:30 Gage’s pacemaker adjustment, 9:30 psych, 10:30 echoes and EKG for both kids, 11:30 meeting with Doctors and transplant coordinator, 2:00 nutritionist, 2:30 Mary Burge /social worker, 3:30 to the RMH for an interview with Keith Morrison.  Stacy and I have made a pretty good list of questions of ask.  I will share what learn as we learn it.  Sierra has continued to loose weight, she now around 90 pounds for a total loss of 15 lbs. YES, that is one of the many questions we have for Calif. I am sure they will make med adjustments as they look at her labs, kidney function, heart function etc.

Tax season is in full swing, and I have a lot of work, but there are just something’s I just have to do. I will get the work done – on time, but not right now.  Check in later.

(4 hours later) So we picked up some hitchhikers in Burns Junction. Might as well, right?  It was my sister Garrity, and her cute little boy John. They drove down from their home in Prinston Oregon to see us as we were passing by.   They were not planning on coming with us, just decided to do it. We are excited to add them to our adventure.   Hopefully Seth will understand. Later

Wednesday morning.  I took over driving from Reno to Palo Alto. Sierra (or her parents) are not ready for driving over the mountains and into the ‘jungle’.  Now we are at the Blacks in Palo Alto. Gayle, Jed, Abby, and Isabell are very nice in allowing us to stay here. Last night Garrity needed some diapers and supplies since she didn’t bring any. So Gayle let us borrow there Tesla to drive up town.  If you EVER have the opportunity to drive a Tesla, DO IT. It is an electric car that goes from 0-60 in about 4 seconds. It was a huge rush.

This morning, Stacy and I went on a nice run over to see the construction over at the RMH and then through the Stanford campus.  Now we are getting ready for the day.  Had a good pep talk with Sierra about Janice Hayhurst.  Janice is one of my heroes that has fought through may hardships in her life.  Many times she was told she won’t or shouldn’t survive, but somehow she keeps pushing.  She is someone I have looked up to for years.

First up is Gage’s pacemaker at 8:30….   

Talked to Calif

This last week Stacy talked to Hollander, Mary Burge, and other Calif people. 

On February 11th, Stacy and I are going with Sierra to Stanford for the pre-transplant work up. They are hoping to get her on the list shortly after that visit. They will post her as a Status 2 meaning we can wait at home, as long as she stays stable. The new medication they put her on is helping. She has lost almost 10 lbs of fluid and feeling better. We will take Gage with us to adjust his pace maker.

We have lots of questions about the waiting process, all of which we will discuss with them.  

After several calls to our insurance, they will cover a life flight to Calif once the 'call' comes. 

Sierra doesn't like to talk about it.  She feels good and wants to stay here. 

Here are good pictures of the kids.

 Lindsey and her awesome teacher, Dana Marlia.

 Hunter playing point guard.

Lindsey and Ayla helping Stacy with in the kitchen.

Not on the list yet.

Fortunately or unfortunately we don't have much to report.

Calif hasn't gotten back to us regarding Sierra going on the transplant list. We understand there are really sick kids at LPCH and Sierra is NOT one of them, thank goodness.  They did have us pretty worked up about Sierra's heart conditions, and the need to go back on the list, and they needed to visit with the heart team to confirm the appropriate action.  It's been a week and a half now. We are going to call tomorrow and review our questions with them and see where we are at.  It would be great if she did not need to go back on the list, and maybe that is what they will decide.  We just need to visit with them.

With the addition of this new med, Sierra's puffiness and water weight has stayed down. She has lost about 7 lbs of fluid, and looks and acts good.  So we are not feeling an urgency to get her on the list. But, if it's going to happen, let's get 'r going before issues arise. Sierra is on a mountain of meds so who knows how much wiggle room we have.

Having said all this, she and the rest of the gang are doing great.  Days are full with school, basketball practices and games, dance practice, skiing, work, church, and living. All stuff we love.
  

Understanding the zeros

I know this post is a bit overdue. This is all something that is hard to face. We just want to go about our lives and pretend none of this is going on. But it is, so lets deal with it.  To clarify some of the issues.
Both Sierra and Lindsey did get zeros. That is awesome!  Lindsey does not need to be seen by the doctors for 6 months (a luxury Sierra has never had).  Lindsey is actually bummed about that, she likes going to Calif to see her friends, teachers, nurses, and doctors.
For Sierra, the zero is both good and not-so-good. It is good because she has no rejection.  The body is not fighting against the heart. That is great!  It is not-so-good because the heart failure can not be blamed on rejection.  If it was rejection that was causing these high heart pressures and poor coronary arteries, then they would have something to treat.  IV's and meds could get the rejection under control. But since there is no rejection, there is nothing to 'treat'. The water pill they added has seemed to help.  She has lost about 5 pounds of fluid since last week.  This water pill is in addition to all other meds she is on. The MOST important thing to notice is how she feels.  Right now she feels and acts good, she eats well, and her spirits are up. I would like her to try exercising a bit but who knows how that will go.  She really hates to talk about it.  She just wants this all to go away!!
We haven't heard from Calif regarding going back on to the list.  They were going to get back to us Friday, but still haven't heard anything yet.  We figure they will let us know when they have to an agreement on the best treatment plan.  I have many questions to ask and understand.
Other than that, it is life as usual.  Lindsey had a basketball game, Hunter had cub scouts, Megan had practice, Sierra had dance practice, and Gage loves to tag along. We are involved in skiing, building snow men, and anything else we can find or need to do.  Other than talking about this on our blog, life just keeps matching on.  The best thing we can do is just live life and not wait for something to happen.
Till next time,

Treats with the cousins

Hunter and cub scouts at the police department

 Once there was a Snow man...

 Tall, tall, tall....

 In the sun he melted,...

 melted....

And great was the fall there of!

Poor guy didn't even last 12 hours.