Sierra Update #9

Sierra is doing great. Her DSA test came back negative!! This is the Donor Specific Antigen test that they take before they gave the IV immunoglobulin (IVIG) and then they take it again after the immunoglobulin. The DSA test was positive before the IVIG which was causing the rejection and now it is negative meaning the IVIG worked in getting rid of the antibodies. She will receive the IVIG treatment for 2 more months now and then she will be done, we hope, nothing is for certain.

Sorry for all the pictures. They're for Jason, I am giving him an update on the yard. Thank you for checking on us. Bye for now.

I wanted to show you all the blossoms on the cherry tree.

The front flower bed with a newly stained porch.

Your favorite rock with flowers and green peppers.

The newly stained back deck.

The garden poking up through the ground and our stained playground.

HAPPY BIRTHDAY JASON!

Happy Birthday Jason!! We are so sad we can't be there we love you so much!! Sierra is doing great. Her energy is up, she is eating great and there is no swelling. They will read her heart rhythm that was recorded yesterday, either today or Monday. Then clinic Wednesday and hopefully home after that.

On a lighter note. Lindsey was diagnosed yesterday with viral pneumonia. She has been having a difficulty breathing lately and took her to the doctor yesterday. Thus, the reason why we are here and Jason and Sierra are there. It's always nice to be on a first name basis with everyone in the doctor's clinic.

Happy 39th my love, I terribly miss you!

Sierra and Haley at a Giants game Wednesday.

Sierra Update #7

Just a real quick update. Sierra had clinic today. Which is where she goes into the Dr.'s offices and sees the doctor. She has an irregular heart rate which they feel is due to the high pressure still in her heart from the rejection. They told us she is not stable enough to go home but she does not have to be admitted to the hospital.

She gets to wear a heart monitor around for 24 hours that records her heart activity. They will interpret that and see her in clinic next Wednesday. Unfortunately, this is not the news we were hoping for. However, She is where she needs to be right now.

Memorial Day

Sierra is doing better and better. She had more energy yesterday and minimal swelling in her abdomen. In fact, she had enough energy to go with Jason to Santa Cruz and ride the rides on the Boardwalk. They spent the whole day there and had a great time. I am so glad they were able to get out.

Tomorrow Sierra will have a chest x-ray, echo and lab work. Then she will see the doctor's in their clinic and we will have more answers. We are hoping if she continues to do well that we can convince the doctors to let her come home Thursday. We're are going to attempt the "It's Daddy's birthday Friday and we need to be home for that." Hopefully with a little batting of her eyes and a tear drop, if she has to, all will go well. I told her to practice her crying.

As for us here at home, we are doing well and missing our Daddy and Sierra terribly. Gage started another cough and I have upped his breathing treatments again but hopefully it won't last long. All the more reason we stayed here and Jason is there. Hope you all had a wonderful Memorial Day and thank you to all the men and women in the service who are fighting for our country. Thank you Justin!!

Sierra with her cotton candy on the warf in Santa Cruz.

A little bumper cars anyone? Does this look familiar Aunt Cindy?

Sierra update #5, Sunday 5/24/09
Hi guys, Jason and Sierra here. We were released from the LPC Hospital 24 hrs ago. We are at the Ronald McDonald House #MS-203 (same one from 3 years ago). Sierra is doing OK, not great (yet). Her appetite and energy level are still not back yet and there is still some swelling in her tummy. This is why we are hanging around here for the Dr's to keep an eye on her. We have a clinic appointment, echo, x-ray, and blood work on Wednesday. I am hoping, they might let us go home to Oregon sooner IF she looks, acts and is better. We will just have to see. They think the swelling and appetite relates to the rejection (anti-bodies in the blood) she was treated for. We are sure glad she got the 1a on the biopsy. If it is confusing to you, you are not alone.

It's kinda hard without my dear wife and kids here. I get to be the strong one for Sierra. Sometimes it's kinda hard, any little dips scares me to death. My wife is so strong and such a strength to me.

Anyway, we made the drive up north to Santa Rosa (with the permission of the Dr's) to see our dear friend Ben Thorton and his family. He is the little stud who got a heart the same day as Sierra. Below is a picture of Sierra, Ben and Ava. We sure like them. It was nice to get out of Palo Alto for a while.

Sierra Update #4

We finally got Sierra's biopsy result back and it was a 1A!! Yeahhh!! That is just one step above a zero. Since her last biopsy was a 1B we will take it. What this means is that she will not be going back on prednisone. So, she will not be looking like a marshmallow. We still don't know the results of the DSA test that would tell us if the IV immunoglobulin helped the rejection or not. So, we are waiting to hear back on that. She is still retaining fluid, so they have started her on some Lasix. Her blood pressure has been a little high today, a result of the aftermath of the steroid. So, they are going to keep her one more day to monitor that. It is looking like possibly tomorrow she will get out of the hospital and be able to go to the RMH.

Sierra update #3

I apologize for the delay in updating. I was hoping to be able to update with Sierra's biopsy results. We will probably not know until tomorrow. However, they did take measurements of pressure in her valves or ventricles and normal is supposed to be 10, she measured 25. It was significantly higher and their pretty sure that is due to the rejection.

She may get out of the hospital tomorrow or the next day, however, they don't want her leaving California for AT LEAST 2 weeks. Unfortunately, she will miss the funnest last two weeks of school. She is bored crazy, but has bursts of energy that last for about an hour and then passes out with exhaustion. Jason has done a great job of taking her for a lot of walks to keep her busy but you can only walk the hospital so many times.

She is done with her IV treatments and they are waiting to see what those test show to know whether she needs more or not. Not a lot to update but we do at least know some kind of time frame. While she has been there she has gotten to see a couple of friends. Kevin who got a heart in February and had the exact same illness as Sierra (dialted ideopathic crdiomyopathy) and Noah who received a heart three weeks after Sierra.

I was planning on heading over to Cali on Saturday to switch guards, but Gage was sick last weekend and they don't want him around Sierra for awhile. So, we will see. Thanks for your thoughts and prayers.

Sierra up at 5:50 AM ready to conquer the world.

Sierra, her ICU nurse and Kevin.

Sierra and our friend Noah.

Real quick update on sierra, she received her IV Immunoglobulin today which is a 12 hour infusion. They give her benadryl in between each of the three bags. So, she was really groggy for most of the day. They repeated her echo and it was normal with no change from her admission. ( A good sign). She was supposed to go in for her biopsy at 4:00 PM today. However, she just went in at 7:45 PM this evening. We still don't know her results and may not until tomorrow. A lot is pending on the results of the biopsy.

Her spirits are good and she just wants to be out of there. She has a few periods of being a little emotional due to the steroids. She started crying today and told Jason, "I don't know why I am crying, I don't even hurt anywhere." We are trying to prepare ourselves for her to looking marshmallowy again due to the steroids. I will update as soon as I know anything. Thank you so much for checking on us and for your prayers.

Sierra in the PICU doing laps while waiting to go in for her biopsy.

Dr. Andrus who cared for Sierra Aug 2nd pre-transplant. He put many hours in at her bedside.

Sierra in California

Just a note to let everyone know; Sierra is in California. Not by her choice. Sunday she was complaining about swollen feet. They were huge, so to make a long story short, she got some x-rays and an echo cardiogram and California wanted to see her now. Today at 11:45 she was life flighted from Boise, ID to California. We were told, she is in rejection unless proven otherwise. They repeated her chest x-ray and echo there and found them to be normal. They ran a test called a DSA test, which stands for donor specific antigen, which came back positive.

Her biopsies she has been getting, test for rejection in the muscle cells of the heart. Which hers have been 0 and 1A's signifying no need to run the DSA test. However, with her having a full year of 1A's and now a 1B they wanted to run this DSA test. So, like our good friend Shawn, they are now looking at rejection in her blood. They are giving her some IV immunoglobulin which she will have to continue monthly until her test comes back negative. They have also given her some steroids and plan on doing a biopsy tomorrow evening. Once they know the results of that then they will be able to make a plan for her care. Worse case scenario she will be there for 2 weeks.

You must know, she is acting great. Not wanting to be there , but is coloring reading and could care less if the doctor's are talking to her or not, she "wants to go home." I will update as I know more.

Sierra in the PICU in California.

Sierra Update

Sierra went to California this past week for a biopsy. Unfortunately she got a 1B. Since June of 2008 she has gotten a 1A. Meaning that she has had some white blood cells lurking around her heart, but not doing anything. 1B means that the cells have changed, they are a little "plumper" and "inflamed". So, we are a little bummed with the news. we were really hoping we could do the 'zero' dance. They are going to switch her medicine and make a few changes. Then we return to California in 6 weeks for her next biopsy.

While she was there, she participated in a study on short term memory loss in patients with transplants. She got drilled all kinds of questions most of the day and definitely earned a reward.

Before her biopsy, the girls had some friends over for a tea party. It was a lot of fun and Hunter (aka "Bob") was the server. It was just too cute.

Sierra participating in the study.

"Bob" serving the ladies at the tea party.

The girls enjoying being served at the tea party.