Monday, February 18, 2013

Feb 18, Day 4, First walk and Sierra's plan

Monday
This time we slept until 5:00 am before the call, but I guess she tried at 3:30 am and we didn't 'hear' our phones.  Lindsey was NOT impressed.  Oh well. Lots of good stuff today. She is down to 3 liters of oxygen, and breathing much better. Her kidney's have kicked in and doing much better. They have pulled two of the three chest tubes and two IV's. 

Transferred a lot of her meds to oral rather than IV. Her old cannula sites have dramatically slowed down with the drainage.  She has been ok'd for a full diet, but of course doesn't want to eat / drink as much as she needs. Hopefully that picks up before the dreaded feeding tube has to go in. She is eating a little, just have to see. The Princess fiery personality isn't back yet, but getting closer each day. You can see that 'recovering' look in her eye.

Best of all her favorite physical therapist came by, got her up, and took her on a nice long walk around the unit.  They are talking about letting her go to 3 West tomorrow!! Now we are talkin'!

They just moved us from the corner room back to the SAME room she was in when she was on the Berlin. Everything feels the same except a lot! She is fleshy, healthy, no blood thinner, and most of all no Traeh Nilreb!  I remember sitting in this very corner 7 months ago on the 4th of July looking out the window doing my updates. Strange thoughts.

Still looking at Wednesday evening for the ceremony.

As for Sierra, they have consulted several experts from around the country and Canada. Tomorrow we need to have her here for placement of the port catheter through her vein. This port will be in for the 5 plasma pheresis treatments.  The first treatment will be here in the CVICU tomorrow and will last a couple of hours, she will then stay here for 24 hours to make sure everything is okay. Her next treatment will be 2 days later in the Short Stay unit down stairs.  She will have treatments every other day for about 12 days.  At the end of the treatments, she will get a new IV medication, get a 12 hour IVIG, repeat the biopsy, then see where her anti-body mediated rejection (AMR) is at.  (AMR is becoming a cuss word among transplant patients).

Just so I am clear, she has elevated pressures in her heart, it squeezes fine, but is showing signs of stiffening. If this therapy doesn't work, we will be reintroduced to the thought of a 2nd heart transplant for her.   I understand there is a lot of uncertainty and we will understand more as this treatment moves forward. They admitted, they have not very many kids need this therapy. Usually the IVIG has worked, so this will be something relatively new for some of them. Doesn't that just make you feel warm and fuzzy inside!  God has heard and answered prayers before. Miracles do and have happened. No reason in the world why he won't hear and answer these prayers. He knows each one of us and has a plan for us.

I have said this before, but I must repeat this for myself.  Lindsey AND Sierra both including the other kids need to see and feel and know that their parents have all the confidence, hope, excitement, enthusium, and faith that they will pull through this.

So tomorrow, Lindsey should be heading to 3 West and Sierra will be here in CV. BRING IT ON!!

Gage, dad-gum-it, don't you even think about it!

 Drinkin' and getting ready to ambulate

 We are movin'
 During her walk, a visit to an old friend, traeh nilreb.

Jerry from RT, She still likes his hair.
 
 Dressing change for the old Berlin sites.  It really did remind me of a cancer eye cow. I have other 'better' pictures but didn't post.
 
 

38 comments:

Anonymous said...

What can a person say except awsome and all of the prayers are with your family

afriend said...

Wow! Way to go Lindsey!!!
We couldn't be happier for you!
Sierra is going to follow in your footsteps and have a wonderful result in her next biopsy! Can't wait until we hear that you and your family are walking out the front doors (oops...being wheeled out..they insist on that) and are on your way back to your home in Oregon!
Much love and prayers to you and your entire family.
Lolo (Ava's grandma)

Becca Gilbert said...

Good job Lindsey Lou!!! Just keep getting stronger every day! And Miss Sierra... We are ALL praying for you too!! Just keep your head up! And I'm with you Jason.... Don't get any ideas Gage (or Hunter or Megan)!

Kurt said...

Wow Lindsey! You look so much better, much happier, even a smile in the picture with your RT. The walk is another huge step--keep it up! Just think even a week ago where you were at, you've come so far!

Sierra, we are all pulling for you and sending our best everythings your way!

Anonymous said...

That is so great to hear how well she is doing. That video just brought tears to my eyes to see how good she is doing as your lil princess is a beautiful girl. My prayers an thoughts are with you all as your beautiful girls can continue to stay strong. Really hoping an will be praying this new treatment goes well an helps Sierra as will be thinking an praying everything works out. I believe everything will work out as they are beautiful an strong willed. Loved the pictures today an video! My family an I send our love an prayers to all of you an look forward to reading your next update.

Unknown said...

You are looking great Lindsey!!!! Sending love, Mrs. Scott

Sarah said...

So glad to see Lindsey up and walking and looking so great!

You are all in our thoughts and prayers each and every day. I was in North Powder this weekend and I couldn't help but think about what a wonderful homecoming it will be for your family when you return in a few months.

Best to you all!
The Andersons

Anonymous said...

Thank you for not posting oozing wound pics! Teacher Karen has a weak tummy! I still marvel that Lindsey's chest was opened, a heart removed and replaced, and she is up and walking in four days! Our prayers continue as your days progress!
mrs. t.

Anonymous said...

Oh Lindsey and Sierra you guys are my new favorite superheroes :) your mom and dad are pretty awesome too! I met Stacy once at the St. Lukes NICU when she came to visit her friend in 2010. I had heard about Sierra's battle from my SIL Theresa and I was inspired by the way Stacy kept it all together. Following your family's journey now I am even more in awe. I appreciate you letting us follow your journey Bingham family! Love, Genevieve Troske

Anonymous said...

The kids are I were looking at the photos and video - it's amazing how many questions a 5-year-old has! A sample: "Why'd she get a new heart? Where's she walking? Will I need a new heart? Where's Lindsey live? I want to send her a card that says I'm glad you got a new heart. Can we go visit her?"
- Lisa Britton

Anonymous said...

Jason, and Stacy, I wanted to share this little story with you. Tonight I was helping Clayton (Clayclen) with the FHE lesson. It was on feeling the holy ghost. I told him to think of a time when he felt the holy ghost and share it with the family. I was saying: "Like when he has taught you, or he helped you with a problem, or you were listening to someone and felt the spirit......" Casey (age almost 9) jumped in and said: "Like when Lindsey got her heart." We all stopped and looked at him.... I asked him if he felt the spirit when Lindsey got her heart. He said: yes. It brought tears to my eyes. Out of the mouths of Babes. :) I know that Lindsey's heart was a miracle, but it sounded so sweet coming from our little boy. Thank you for sharing your story with everyone, you are truly on your own special mission. Eva, and Bob Vaughan.

Shanel said...

She is looking so great!! Thanks for your posts, I check several times a day to see how things are going with all of you. You are all a strength to my testimony and show so much courage and resolve. Love and prayers from the Shaw family. :) -Shanel Shaw (the one married to Joe)

Suzie Dyke said...

Looking great Lindsey! All of us in the surgery department at St. Al's Baker City continually share updates with each other on how you are doing. We are praying for you and rooting for you and Sierra every day! Jason and Stacy...you are an inspiration to me! Amazing and wonderful examples of support and devotion you two are!
Suzie Dyke

Anonymous said...

Continuing to pray for your guys' family! You are all truely an inspiration to so many! Stephanie Petrucci

Daisha said...

Many thoughts and prayers for Lindsey, Sierra and all of you. What an journey your family has been on. I am continually impressed by your faith and strength. Thanks for your fine example!!

Anonymous said...

Lindsey, you look beautiful!!
Madsen family, La Grande

rondacae said...

Woohooo, Lindsey! The girl that makes a heart transplant look like a piece of cake! Keep at it and you'll be running marathons with your mama and I any day now! (Well, maybe you'll run marathons--I'm only doing halfs!) :)

Praying for a speedy recovery for you and for positive outcomes for Sierra!

Love you all!
The Fritz's

Jen said...

Lindsey, you look so AMAZING!!! I am so proud of you and how strong you are. When I grow up I want to be brave and strong just like you.

Sierra, hang in there sweetie. Everything is going to be just fine. You are so strong and so brave just like your little sister. And I am willing I bet she has learned those qualities from you.

We are praying for you sweet family. My kids ask multiple times a day how your kids r doing We love you and are here if you need us.

xoxoxoxo's Aunt said...

WOW.

God Bless Us All.

Anonymous said...

Look at you GO Lindsey Lou, you GO up and down, you GO round and round, you GO by traeh nilreb, you GO, GO, GO like no other little Princess...... we could make a GO book for you as we are celebrating Dr. Seuss week early and tomorrow is all for you...."Read your heart out for Lindsey Lou." Should be a great day and week to celebrate. Looks like grandma made it there safely. As for the tough little soldier Sierra, be brave and strong and He will answer our prayers and make things have positive outcomes for you kiddo. Trust in Him as he has plans for you. We pray for each of you to continue to gain strength each day. Here's to a brighter day for you. Loves, hugs, and many sincere prayers xoxoxoxo

Anonymous said...

Thinking of you ALL all of the time. Thank you for sharing even the stuff you don't want to.... <3

Unknown said...

Thank you again for sharing your story, daily updates, pictures and the videos. Everytime I watch the videos, I go through a rollercoaster of emotions for you all. Lindsey is so strong! My continued prayers go out to you and your family every day!

Par 5 said...

This might be a dumb question, but what does the plasma pheresis actually do? and in the meantime, between treatments, does sierra just keep going to school etc? no negative side effects?

heavenly father does provide miracles, no doubts about that. I love that he knows what's best, and we just have to trust in that.

we love your family!

Andi (RrlScrapGal) said...

One step at a time! Looking great Lindsey!!!
Good luck to Sierra today and for the next 12.
Miracles and prayers being asked for.

Anonymous said...

very nice its no longer berlin heart its the opposite!

Nick and Kathy said...

Thinking of you today:)

Dean and Dawnie said...

Yay, Lindsey! It was an awesome video to see you up and walking...without traeh nilreb! You are a whole family of amazing people! We love each one of you and continue to pray for strength and health. The pictures of Sierra and Megan caring for Lindsey after surgery truly touched my heart. What an experience in compassion. You are teaching me....your lives touch ours and your spirit of Faith inspires us!
Sierra, be strong and continue to TRUST Heavenly Father. Blessings to you as you continue in this mortal experience.

Bonnie Bingham said...

Uncle Jay and I are thinking of you today as always and can't wait for you to sit on his lap... Our prayers are with all The Bingham's

Anonymous said...

That is an amazing walk! Go Lindsay! And good luck to Sierra -- I'm praying for her heart too.
Pam (Olsen) Whitmore

Anonymous said...

Hey Lindsey, you look beautiful! Love to see you up and walking around 3 days after MAJOR surgery! Amazing! When I had a C-section with the twins. The nurses made me get out of bed and go for walk 3 days after surgery, I made it to the door and turned around and crawled back in bed:D You are a trooper.

Good luck today Sierra, we will be praying for you!

Jason, Josh has some pretty good pictures of cancer eye cows:)I sure hope that thing heals soon!

Kari

Anonymous said...

Yay Lindsey!! Thrilled she is doing so great!

Sierra is going to get through this too. Just another bump. You have a great attitude mom and dad...keep up the good work! I love what you said before, you take care of their emotional needs and let the doctors figure out the physical. That worry is best left with them while you shower your kiddos with nothing but love!

~Prayers~

Anonymous said...

I was just shared your latest news....a little bump in the road, right? I broke my Lenten promise by getting on fb to reach as many of my friends who know about your family to get the prayers going extra hard! I think God will be ok with that, it's for a good cause, your cause :)
Just want you to know we all in your corner, praying for your continued faith, courage, strength and love thru this stressful time. God bless you. M.

Anonymous said...

Facebook is blowing up with the latest news. People are praying. You are on a prayer chain at our church. God be with you and I know he'd is with Lindsey. This little community is pulling for you all as if she was our own daughter!

Lou said...

Hey Lindsey Colette here. Loved the video and was so excited about you being up and about so soon after transplant and thrilled to see no Berlin. You are an inspiration. You, Sierra and your family are constantly in my prayers. Many of my friends are also praying for you. I hope to come see you a week from tomorrow in 3 west. I'll check with your mom and let her know if I can bring you anything. Refills for your gumball machine? God bless you all and sleep well. Colette

Anonymous said...

I read Facebook a little while ago an keep checking for updates...... You take care of yourselves and your girls!!!! Thinking and praying for you!

Dear Heavenly Father, gather this family in your love and continue to give them strength from you. Show them they are all stronger then they could even fathom. Use your tended breath to blow air into sweet Lindsay so she can breath on her own..... While she sleeps give her beautiful dreams and the strength to get up an walk another day this week. Wrap each of her family members with a blanket of your love and protection so they feel you, even in the hardest, darkest moments. Thank you for blessing all of us faithful followers of their blog to share in their story and for blessing Jason with the beautiful ability to write and engage our hearts, compassions, and prayers. Give him strength from places he didn't know he had any. Thank you for blessing Stacy with the patience, strength, love and wisdom to love and take care of her babies long before she takes care of herself. Amen!

Unknown said...

My heart is so heavy today. I heard the news around four and I fell to the floor weeping. And said a prayer begging and pleading that God spares her her life. I'm so sorry. Stay strong Lindsey is a strong girl she will pull through this. I'm deeply sorry. I love you Lindsey.

Anonymous said...

Thank you, God for hearing and answering our prayers, Amen!
Guess he's just keeping the staff on their toes....the rest of us, on our prayers :)
I will pray for you two that your stomachs will come down where they belong and your hearts back up where they belong! Wishing you a good night's rest after this. God bless you! M.

Unknown said...

Prayers with you always Lindsay lou you have a great prayer chain out there daily for you and will continue for a long time.. Look forward to the posts daily of how she is doing :) Prayers with you and your family