Wednesday, February 20, 2013

Feb 20, Day 6, Big improvements...but don't ask her

She has had a great day! Everything in the right direction, but don't ask her. They have her blood pressure more under control, no signs of additional seizures, she is completely off oxygen, took four small walks, eating a little bit, her lungs are beginning to open up, and they took her central line out of her neck.  She has been cleared to go to 3 West, given there is room up there.  Compared to yesterday, she is doing great.  You would think she would be jumping for joy (we are). But....

When a child has major heart surgery, a seizure, and is pumped full of steroids, her emotions are a bit out of wack. She honestly thinks she had a horrible day. Tears have been falling, and she doesn't know why.  (Makes me wonder if this is what we have coming with 3 future teenage girls.)

Sierra's plasma pheresis went well today, she was pretty nervous but did just fine. The procedure took about an hour and a half. The old '60's lookin' machine pulls the blood out, spins it to separate out the plasma, and replaces it with fresh plasma. Given her weight and size, the blood should have circulated through the machine one and a half times. On Friday she will repeat the procedure in the Short Stay Unit, then Monday, Wednesday and Friday of next week. They do the first treatment in the ICU to watch for side affects, but the next four treatments will be in the Short Stay.  The plasma is where the damaging anti-bodies are.  Hopefully by cleaning out the antibodies and replacing them with 'good' ones, her heart will improve.

Sierra is tired and her shoulder is sore but she is doing well.  For now, she is going to go to the hospital school to do her Jordan homework, but may go to Jordan as her shoulder heals up.

Tomorrow is a big day for the Princess, it is her first biopsy. She will go in around noon and see where she is at for rejection and heart pressures.  Also hoping she will be transferred to 3 West. If she is up for it, we may even cut the chin hair. But before I give her any sharp objects, we need to have a pretty major change in attitude.

That's it for now, good day. Today was a good example of not letting yesterday's lows get to low, but be careful of the highs, everything in balance.  Today we are truly grateful for the many prayers being answered in our behalf.   As always, thank you for the comments, love and support.

 Hangin' out is Sierra's room. Doin well, but not much for personality.

 Today Chloe went home. Not just the RMH, but HOME! Lindsey mustered up a smile, but she didn't want to.
The machine.  Looked like some sort of old Reinke pivot panel.


Anonymous said...

What a day compared to yesterday.... keeping the lows and highs balanced is definitely the trick and important to keep the emotions under control. (Oh yeah right....easier said than done! ) Pulling for a change of attitude so Miss Lindsey Lou can do the honors, but with all things considered.... I'm pretty sure my emotions would be out of wack, too. Hang in there Linds. Maybe getting out of CVICU will help with that and be just the trick....praying for your room to be available tomorrow. Sierra is one incredible and brave big sister. Keep it up. I'm thinking I should book a flight so I could help with that homework too! Thank goodness for the awesome teacher at the hospital... Logan thinks he's the best!! Here's to another good nights rest and for a super Thursday. Loves, hugs, and many prayers xoxoxoxo

Anonymous said...

P.s. love all the pictures!!! And Jason I love how you can always find a way to relate things to things back at us E.O. folks a better description!!!

Gloria Sheehy said...

Now that's more like it!!! So glad to get some good news!! Lindsey and two cookies are marvelous, keep up the good work!! Mom and Dad, hoping you all get a good night's sleep!! Prayers going up, and more blessings coming down. I just know it!!

Grandma and Grandpa said...

Yeah for a great Day 6!!! Amazing pictures of an amazing family! Onward and upward!!

rondacae said...

So glad things are going better! Thinking about you all of the time. You have no idea how much we learn from the Bingham 7 every day. Thank you for sharing your lives with all of us.
Love & prayers,
The Fritz's

Anonymous said...

Great news! I was thinking it has to be a tough adjustment for her - other than the Berlin (obviously) she seemed to feel good...going to school, taking walks, etc. To be back to not feeling well has to be rough. Hang in there! --Lisa Britton

Kristie Osborn said...

So happy things are better today. Your girls are so tough and inspiring. Many many many prayers coming your way.

Anonymous said...

As a mother of 3 girls, yep you are headed for lots of 'fun' BUT it'll be a piece of cake compared to what you've been thru, lol! What, you might not trust Lindsey with scissors??? Lol!
Happy things are going smoother :)
Thanks again for sharing your journey with so many. I am amazed with how many lives have been touched by your family!
God bless you all! Prayers always for continued progress :) M.

Steph Tidwell said...

Your girls look great. I am glad Lindsey is improving. I pray that the treatment will work for Sierra.

Sarah said...

Hooray for a good day! Here's hoping to better days from here on out!

When my grandma (Jessie Dodson of NP) had surgery on her brain about 11 years ago, it left some permanent brain damage that has caused her to have seizures occasionally. Every time she has one, she is quite weepy and emotional for a few hours afterwards. The doctors have told us that that is to be expected, but it is sure hard to watch her cry after she goes through one. Praying that Lindsey's new medication prevents her from having another one!

Anonymous said...

So excited to hear that Day 6 was better! In my book, Lindsey is allowed a long series of varied emotions -- you all are. At least right now you can explain it all. When the teenage years come you won't be able to explain it and there is no medication to change!

There is no question that you are amazing parents with nothing but the best interests of your children in mind. You are raising amazing children with resiliance, grace and compassion! Thanks for the gift you are giving to all of us. You have my continued prayers..
Karen from Ohio

Donna said...

I'm in tears and I don't have anywhere near Lindsey's excuse. However, the scissors and your chin comment did make me laugh. Good Luck there:) You girls are beautiful!!! I love the pictures. I put your family's name in at the Provo Temple. A million prayers coming your way! Thank you for the updates Jason.

Caroline said...

Thank you for sharing your family's story. I have been reading your blog for a few months now, via the facebook updates. I saw your family on the Today Show and though (they must be LDS, I can see it).

I couldn't believe it when I saw Lindsey went in for transplant on V-day. What a miracle. Thank you for acknowledging the hand of God in all of this. As you share your experience I can feel it too. It strengthens my testimony. We have a little boy in our primary whose been fighting cancer for 18 months. As soon as his scan came back cancer free, his kidneys failed, then he broke his foot, now he's in the hospital again. I can't believe the ups and downs, I can't believe Sierra is so brave with all she is going through too.

I will join with all the others in praying for your beautiful children and for you as parents. That the doctors and nurses will be led and guided. I know He hears us, He is in control.

Caroline-Logan UT (Go Aggies)

Bradey Merrill said...
This comment has been removed by the author.
Lacey Merrill said...

I used to donate plasma so Sierra maybe your getting some of mine :) I should keep donating knowing its helping my family :) love you all glad to hear such good news SMILE LINDSEY maybe you just need a joke like the good old days:
What animal needs to wear a wig?
a bald eagle!!!!!!!!!!!!!!!!!!!!

Kay Patterson said...

Dear Lindsey, I know you got a heart on Valentine's Day. Hope you can come home soon. Do you know it's snowing here? kellee dixon 4

Debra Ziegler said...

Praying for all of you. Steroids can do a number on your emotions so don't blame Lindsey on her up and down emotions. Loved your pictures the other day of her sisters taking such good care of her. I'm not sure how you guys juggle everything on your plates. It must be your faith and love. Hugs all around.

Anonymous said...

Jason i think it is going to take the chin hair ceremony to bring a true smile to that sweet little Lindsey so, although i know you've grown fond of it, maybe it is time to get our the scissors.
I'm sure it seems like forever to your family but it is hard to believe that it has been just a week since Lindsey received her heart.
I hope you continue to get good news, on both the girls. Thanks for always taking the time to post, as others have said, we check for updates throughout the day.
God Bless your amazing family. Prayers continue for all of you.
Love, The Hamann's

Molly Smith said...

Oh gosh - I can't wait for the chin hair ceremony. And, I'll have to agree to the emotions that will run through your household during the girls' teenage years.

We received Lindsey Lou's valentines today. The kids were so excited. Thanks Lindsey for the sugar high! Ha ha. We have a package for her that will go in the mail on Monday.

You all are truly amazing. We miss your faces in Eastern Oregon, but honestly feel so blessed that you are sharing your lives with all of us. God bless you all!

We would like to skype with Lindsey (or at least me! HA HA!) as soon as she's up to it. I sent her a skype message earlier. xoxo Mrs. Smith