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.

Easter and Sunshine!

Sorry it has been so long. It has been a crazy month. So in a quick recap. Easter was very fun. Wendy and Jake had their annual horseback egg hunt, which we ended up having half decent weather for. After Easter Sunday we got a warm trend here. With weather in the 70's-80's, making it most tempting for a bar-b-q. Last Sunday we set up our lawn chairs and put up our canopy and cooked hot dogs in the fire pit. The kids were complaining about it being to hot . I quickly reminded them that this is our annual spring teaser and the cold weather will shortly return so, "get outside." The cold weather has returned and is now in the 50's with a roaring wind to accompany it. Perfect for opening of baseball season. All is well here and we are enjoying just living life.

Hunter, Lindsey and Sierra dying Easter eggs.

Everyone in their Easter attire.

The sunny day Bar-B-Q.

Aunt Garrity, roper, Lindsey, Megan, Hunter and Sierra.

Daddy and Hunter playing baseball. Hunter has really gotten wild about baseball.

Hunter helping Dad at Megan's baseball game.

Megan loving baseball when she hits the ball really hard. Not liking it so much when she misses. (what a competative spirit)