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.

Jan 14, Biopsy results, Round 3??

Had the biopsies today, and as Stacy and I had worried, the news was less than great for Sierra.

To help set the stage, Dr Perry does the biopsies, and has done for over 8 years now.  He does an excellent job, and we are very comfortable with him and his care, but he is a man of few words.  We have learned that if everything is OK on the biopsy, you might get a 'she looks fine'. But if there are concerns he will talk.  This time he 'talked'.  He told Stacy that Sierra's heart pressures are up (a sign her heart is not beating properly), her coronary arteries are slightly more restrictive, and heart is squeezing hard enough.  This helps explain the puffiness, fatigue, nausea, and the cough.  He talked to her about listing her on the transplant list. Something we were fearing.  I'm just glad we will have options.  
Stacy says it best in her Facebook posting:

Just to set the record straight. Sierra is NOT on the transplant list. They are having a meeting Friday and would like to list her as soon as possible. She is stable and doing fine. The wait is so long now that they want to get her on the list before she is really sick as transplanted hearts do not respond well to VADS (something like the berlin that Lindsey was on). Her Pressures in her heart were high today and with her swelling she's been having, she is not getting better. We will know more Friday. She will probably be listed as a 2 and we may be able to wait at home as long as she is stable.

That is really all we know for now. Unfortunately we know to well what is ahead of us.  Still many questions to understand or at least ask.  Mostly what new issues will arise from a re-transplant, antibodies, kidneys, rejections, etc.  Are there new therapies developed in the last 2 years we don't know about. How have other patients responded to re-transplant. What are the VAD options? Will our insurance allow us to wait at home? How fast am I allowed to drive to California once we get the call :) When or how should I start growing my facial hair. And the list goes on.....

For now, they are coming home . Going back to school, skiing, dance, life, the way it was and should be.  Sierra will be adding another med to help with the fluid retention, but other than that, everything else is the same.

Oh yah, Lindsey's biopsy went GREAT! Everything was normal. Rejection results for both the kids tomorrow. Depending on final results of the biopsies, Lindsey could go 6 months before her next biopsy. crazy.

Sure fled bad calling my mother today. This kind of news is hard on her. She is a wonderful Mom and grandmother to my kids.

Here are few fun pictures so far from the trip. 

Waiting at the airport.

Who can forget Shannon.

Back into School and life

Well we have jumped back into life. Sierra is in dance and skiing and having a great time. Megan is loving the junior high basketball.  She had a valuable learning experience in Joseph, one I hope she does not forget.  You will need to ask her about that.  I am coaching Lindsey's YMCA basketball,  we have a lot of work there!  Hunter started his YMCA basketball, he is very excited about that. Seirra, Hunter and Lindsey have skiing through the school ski program. Gage is happy just being a boy. Stacy is a moving and grooving with raising kids, tending to her husband, working, and keeping it all moving.

Lots of homework, band instruments, life excitements. Still good to be home!

This week is biopsy week. Stacy, Lindsey and Sierra leave Tuesday morning. They are staying at the Black's and hopefully driving the 'car'. Biopsy Wednesday morning for both the kids. Sandy Cummings and her crew will be there to continue our story. It's the more extensive biopsy study on Sierra to look more closely at her coronary arteries, her heart pressures, and rejection. We want to have some serious discussions about her swelling, weight gains, and fatigue. See how it goes.
Lindsey will have a 'normal' biopsy through her neck to test for rejection and pressures.  Hopefully they return Thursday afternoon.

Lindsey's birthday party

Sierra passed her test and now has her driving permit. 

Fun skiing pictures.

Aunt Garrity helping Sierra with her hair for her dance.

Megan doin' what she loves. 

Sierra's 'boss' dance.