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.