Yes, this is day 1 OFF the vent. A lot can change in 12 hours. I stayed with Lindsey last night. I think I have figured out how to sleep in these CVICU rooms. It takes 3 chairs (none of them recline), 3 blankets, 4 pillows, ear plugs, and Lindsey to sleep to be able to sleep in the room, and happy to do so. At 2:00 am someone's humble prayer was answered. Maybe it was a prayer given in Haines, Vale, Provo, Sugar City, Burley, Korea, North Powder, Salt Lake, Palo Alto, or somewhere in between. A doctor came in and asked if we wanted to take out the vent. Heck yeah! Lungs have improved enough from the 2nd chest tube that they were OK with extabating (taking out) the tube. We were all pretty excited. Right now Lindsey talks with a faint whisper. She will talk more (a lot more I am sure) as her throat feels better. Lindsey still didn't sleep much. I think with all the pain meds and 'stuff' going in her body, her clock has to be off. But I went back to sleep just fine. (That's not mean, I was just tired). I did get a smile from the 'Fly' joke. 1 out of 50, not bad.
This morning Stacy and Megan were over, painted Lindsey's nails and even painted Bernstein's nails. That was funny. The surgeon, Dr Meada is going to change the Berlin pump out today at 2:00 pm. She has been off the blood thinner for 5 days and the risk is getting pretty high. So instead of waiting until its an emergency to switch the pump, they are just going to go ahead and switch it out. There are enough small / medium clots in the pump they don't want to take any chances. I am way good with that. They will do the procedure in her room, but she will be lightly sedated. The pump will be 'off' for about 90 seconds as the device is switched. Look, no fumble fingers, no shakes, no oops, no 'where is my leatherman'.
They had her sitting up for about 25 minutes, and should have her up again after the procedure. Walk tomorrow. She has had a popsicle, but to every one's disappointment, she still doesn't have an appetite and probably won't till transplant. They don't know why, but that is why she has the feeding tube. Not sure when they will start the feedings.
Remember the highs and lows. Yesterday was a low, today is a high. Now we need to get the Berlin changed, get her back on appropriate level of blood thinner, keep the internal bleeding under control, get her up, and maybe start the feedings. Now THAT would be a good day.
Later
Daddy
It's 2 am and its a coming out!
Nice big cough to clean the junk out.
My girl is back with a smile.
Megan spending "time" with Lindsey.
Lindsey after her "make over." Like the blue hair?
Dr. Bernstein getting his fingernail painted HOT PINK! The deal was that he had to show it to us in the morning to prove that he wore it all day.
Fun story to share regarding report. This morning in rounds the doctors were extra jovial. When Lindsey is doing better, the Dr's spirits are also up. Everyone was kidding around and in a funny mood. There was a first year fellow leading the rounds, Dr. Bernstein and the transplant fellow Ashwin, Dr. Roth the attending intensivist, and another intensivist fellow along with Mandy and Sandra from PT and OT. The fellow leading the rounds goes through all of the major assessment topics, such as; neurological status, lab values, major organ functions, etc. Dr. Bernstein chimes in and says you forgot the most important system. The fellow intensivist was standing behind Bernstein giving her cues as to what it was she missed. The fellow leading the rounds was frantically searching the computer for what she missed. Dr. Bernstein says, "The fingernails and toenails," that had just been painted. They all laughed and moved on to talking about the changing of the Berlin. Ashwin (transplant fellow) was commenting on how fast Dr. Meada (the surgeon) has gotten at changing the Berlin and is ready to challenge him blind folded. I raised my hand and said, "Do you mind if it is not on this procedure." Everyone laughed. It was a relief to see everyone up beat and feeling good about our status.
35 comments:
Happy Day! I cannot imagine how good that must feel to have that tube out. Good job Lindsey! Hoping and praying for a quick and smooth changing of the pump this afternoon. P.S. The fly joke was my favorite as well :)
She looks so much happier! Hang in there Binghams!
And a good day of good news it is!! :)
Logan has a joke off of a popsicle stick she would love to share with Lindsey (in the spirit of a "popsicle")....
What does the new square say to the old circle?
Been around along time!!!!
Hope this day will bring joy and many more smiles to come. We will be saying our prayers for a safe and smooth berlin pump switch throughout the next few hours!! Love and many prayers for Princess Lindsey Lou! Love you all and thinking about you every moment of the day!!!!
So happy that she is off the ven :):) I think of Lindsey everytime I play Plants vs. Zombies now ((which is way too much)) cant wait to compare scores when we are there in a couple weeks...we love you all like crazy!!!
SOOOO glad to hear this. You don't know me, I'm a member of the Union ward, and heard your story through a friend. I read you blog daily, as do many of my friends. Your family (every single one of you) is incredible. Soaky people are praying for you folks.
With as happy as this post made me for Lindsey, I cannot wait for the day that I log in and read she is getting a heart! Hang in their guys, you are all amazing!
Way to fight like a GIRL Lindsey!
Love you
glenda
Yeah! So happy she is off the vent! We love you Lindsey! James prays for Lindsey and Gage every prayer of the day. We will be praying right now for the 2pm Berlin switch. Thinking of you all! Please call if you need ANYTHING! Chocolate?
Emily Paugh Lassen
So Happy To hear!! We are praying for you guys too! I am giving Josh updates, since he isn't so into computers. I am always checking in to see how your guys are doing. I am so glad Lindsey is doing a little bit better.
Lindsey may not be laughing at every joke, but your comment about "where is my leatherman?" definitely got a good laugh from me! I hope the switch goes well!
Josh
WOOOOOOOOOO HOOOOOOOO, Lindsay Lou!!!!!!! I'm your throat is still sore....Q: What did the pony say when she had a sore throat?
A: Sorry, I'm a little horse!!!
It's now 2:00 PM Pacific Time. Dale and Mike Olsen in prayer that Berli switch goes smoothly. Starting
NOW!!!!! Love Dale and Mike Olsen
Love that the Doctor is so AWESOME that he even got involved with the makeover.....Nice work Megan and Lindsey on Lindsey's makeover!!! Looking good! :) Maybe dad also needs his nails painted along with the growing out the chin hair! :) LOL love you guys! xoxoxoxo PRAYING for ALL GOOD things
Has Lindsey tried licking on a spoon of peanut butter? Geez, I want to help so bad. Tell her she is the sweatiest little, big girl in the world and I send wishes for a miracle. Love you all. C Pratt
Yeah for a good day! Oh I am so glad to have her looking so BEAUTIFUL from her makeover (and Megan's new hair cut is cute)! Good for you Lindsey Lou.
Oh, and I agree with Josh, the leatherman comment made me laugh, reread and then laugh again.
It's so good to see a smile again!! Great job Lindsey
Hooray!! We are so glad to hear the vent came out. I am sure everyone feels better, especially Lindsey as she looks relieved and happy! We will be praying the Berlin switch goes well and a new heart comes soon. Your strength and optimism is contagious. Thank you for allowing us to share this experience with you.
With Love, the Daltons
Here's praying for more ups than downs! I had a crazy stats professor this last year that told the corniest jokes but made me laugh every time, so here's one of my faves: Knock! Knock! (Who's there?) Tyrannosaurus (Tyrannosaurus who?)
Tyrannosaurus Rex EVERYTHING!! :) :) Hope that gave you a little smile Lindsey, even if it's just because it's soooo silly!!!!
What a sweet smile to behold!!! Has anyone ever heard that the Bingham clan is tough as nails? Lindsey proves it!! Go Lindsey!!
Good! You can add NYC to your list of worldwide cities praying for you guys! I'm keeping a close watch, and hoping for the best possible outcome. Hang in there!!! Keep being the awesome parents that you are. Much love,
DeAnne
So glad the tub is out, Great job Lindsey. Also glad that the switch of the pump went well. BTW I love both Lindseys hair and Megans {lindsey love the blue :D very cute} and Megan your hair cut LOOKS adorable very cute cut for you :D
Yey!!! And Lindsey's blue hair & is beautiful...great job with the hot pink fingernail polish, too. Isn't it amazing the joy a the simple pleasure of enjoying popsicle can bring? Will keep lifting all of you up in prayer.
How exciting things are going in the right direction. I'm sure she is so happy and excitied. We will take all the little miracles that we can and be grateful for them. Best of wishes. Love ya Joyce and the 5 boys
Tell Megan I LOVE her hair!!!!! So cute. Lindsey Lou, you are the strongest most amazing 8 yr old I have ever met and I am so proud of you!!! I am so glad that dumb tube is out of your throat. You are a fighter!!!!! Keep fighting, that heart is coming. The Lord is watching over you and answering the prayers of many, on your behalf.
Jason, thank u for the updates. If your haircut is half as cute as Megan's, I'm sure ur looking good :). Like Josh, the leatherman comment cracked me up. You re so strong with such a great attitude. Mom read the pioneer email to me, I thought it was so funny and yet, so true. We love u guys!!
Sound like a great day!!! Good job Lindsey :) Sounds like you've got a really great doctor...not all docs would agree to hot pink nail polish!!! Love it! Hope for another great day tomorrow
Jessica
So happy to hear vent is out Lindsey and love to see the smile too. Wishing and praying for a miracle.
Sarah Johnson and family
Yea Lindsey! I'm so excited that she finally got that dang tube out! I'm glad that Megan can be there, i'm sure it's fun for Lindsey to have here sister there to do make overs:) She looks beautiful and much happier!
Yeah! The smile... priceless! So happy for all of you :) M
Yeah! The smile... priceless! So happy for all of you :) M
I still remember Lindsay Telling Trista "do you ever stop Talking" it will be great to get her back talking. Tell her we love her!
You've got prayers coming from Sandy, Utah, too. :)
Pam (Olsen) Whitmore
Yay Lindsey! Good job on getting the tube out and getting your pump changed. All the kids gathered around when We read your update and wanted to see pictures of your beautiful smiling face. We look forward to hearing how you're doing every day so keep being your tough little self! Tell Megan we like her haircut :0)
WOW it is good to see her smile! Hugs from the Paughs in P.A.
Love the blue hair how fun and the best thing is seeing that beautifull smile again keep up the good work Lindsey. The Shoemakers
Yeah! Lindsey Lou you ROCK!! Keep up the smiles. They are beautiful, just like you. Megan and Mom did a great job on the Makeover. I love the pink nails on Dr. Bernstein. We are sending our best wishes and prayers every day. Thanks for the update. So glad today is a great day. Lots of Love, The Swanson Family
I was introduced to your family blog through a college friend who grew up in the Baker City area (Baxter family). I have been glued to your daily updates for the last few weeks. I am astounded and uplifted by your strength and faith. Your family, the doctors and the donor's family are continuously in my prayers and thoughts. I have shown your story to my children and Lindsey is now a part of their daily and our family prayers as well. I think that Jason nailed it when he said "unbelievable". I think that same thought each time I read a new update. I pray that you may continue to be comforted through your journey. Our family hopes to be able to help contribute to easing your burden in some small way. I look forward to the day when I open your blog and read that Lindsey has received a new heart! May God continue to bless and comfort you.
Mindy D.
Henderson, NV
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