Monday, August 27, 2012

Aug 27, We busted out

11:00 pm.
So they lifted her 'lock down' status this morning, as long as she didn't lick the toys. Still can't go into the playrooms or school but walks are ok. I'm good with that until all the tests are back. Shortly after we went on our morning walk, about 60 feet down the hall, she threw up. She threw up so hard her feeding tube came out. So we decided to come back to her room and take a little break. After a few games of Plants vs Zombies she was ready for a walk. A 7 lap walk no doubt! She did great. They say with the feeding tube feeds and the Berlin heart, her tummy sometimes just gets tired of it and reverses everything.

They decided to give her a feeding tube vacation for a day. Lets see if she can eat enough on her own to keep that thing out. So far today she has drank 2.5 PediaSures, a small glass of gaterade, some grapes and peaches, and a dill pickle (whatever.....that's what she wanted). If she doesn't eat a pretty good breakfast, she will probably need the feeding tube back in.

Tonight she had to take her oral meds by mouth. All good except the liquid Iron. If you have ever had to take iron to help rebuild blood cells you know how nasty that tastes. I think she drank 1/2 a PediaSure chasing that iron down. I taste all her meds just to know, and iron is by far the worst!

Her IV has blown, (doesn't work anymore) so tonight they are taking out the wrist IV and will restart another one tomorrow when needed. She finished her antibiotics so that was good timing.

Tonight Lindsey may sleep well. She doesn't have any IV's or feeding tubes, only the Berlin and heart monitors. Sleep tight my Princess. Tomorrow they may and probably will start an IV and feeding tube.

She has been asking a lot of questions about the transplant process and what has happened to her so far. Last night she sat on my lap and I showed pictures of her from when she received the Berlin, chest tubes, the vent, and all the IV's and complications. She had forgotten what had happened and wanted to know. By the time we were done she was in tears but still wanted to know. She hadn't seen herself before, it was quite a tender experience for both of us. We also went into great depth about the transplant process from the donor to her waking up. She even wanted to know what tool they will use to cut her chest open with. I told her my Husqvarna 455 chainsaw (which I miss dearly). She rolled her eyes at me, she didn't buy that.

My mom is staying the week with us to help out. This week we have 'Back to School night' for the parents. We get to go to Jordan Middle School and Nixon, meet the teachers, and get a feel for what they have going on. We both need to go to that and mom is going to help with the kids. Thanks Mother Dear!

Feeding Tube free! (for now)

17 comments:

Anonymous said...

You're one tough little cookie, Lindsey! Keep strong and happy as best you can. You're doing great.

Hey! I went to Jordan Middle School too... in Sandy, Utah! :P

God bless you guys.
The Bradfords

Anonymous said...

Lindsey, you are beautiful, tough, strong and one amazing little princess. I still think Disney should come up with an mighty and strong princess just like you! And, of course the princess should look just like you...beautiful! Lindsey, do you remember your dream about going home AFTER the transplant? Dreams do come true, especially for princesses! More love and prayers from Korea.

Andi (RrlScrapGal) said...

Oh such beautiful photos of Lindsey.
After reading that she forgot what had happened to her I got a little frightened.. but I am so glad she rolled her eyes at you - a great sign!

Hugs to all of you... and praying for a heart!

Mark and Kristen said...

Looking good without that tube miss Lindsey. Keep trying to eat. You have the best parents ever and someday this will be a memory. Love you.

Karen and Pam said...

Great pictures of a smiling princess. Reading the blog is the first thing I do in the morning, amazed at your strenth and faith. Hello to Leslie! karen Brock

Anonymous said...

Lindsey Lou you are an amazing little girl!! You have an amazing and loving support group that are praying and cheering for you with each step. We are very thankful that you and your family are willing to share your story. :)
It seems as though you made a new walking record of 7 laps.....nice job girl!! Enjoy your grandma time, she is such a wonderful grandma! Keep it up. :) loves, hugs, and prayers to each of you--xoxoxoxo

Colt 45 said...

Hi Lindsey! You look beautiful! Sounds like you are staying strong. We love you and pray for you always, even little Sage will remind someone if they forget to pray for Lindsey! Hope you get to go back to school and to the playroom soon. We miss you.

Kari Anderson

Steph Tidwell said...

hey you are tying up my piano teacher..hehe I guess you can keep her as long as you want.

I am so glad she is feeling better. I hope she had a good breakfast this morning.

Anonymous said...

Lindsey you are such a sweet heart, what a touching little moment between you and your Dad! I like Lynn and Cindy's idea of having a princess after you.What a fun idea! Justin and Em

Krystal said...

Lindsey, You look AMAZING and Beautiful sweet girl!!! So excited you got a few tubes out for a day. My kiddos ask me almost everyother day if you have recieved a new heart yet. We pray for you and your family daily. Keep up the great work Lindsey. Jason and Stacy stay strong. You guys amaze me daily!!! Sending our love and prayers from little vale, OR.

Unknown said...

Such a beautiful sweet and strong girl. I am very proud of you and your whole family for being as strong as you guys are.

rondacae said...

Oh my goodness, Lindsey! I love those pictures of you. You are so beautiful!! I'm amazed at how strong you are through all of this. You make body builders look like wimps, Lindsey! Love you!
The Fritz's

Sheila said...

Emma and Sarah can't wait to skpe with Lindsey at school. They keep asking to talk to her and I keep saying only another week or two. Glad she is feeling better. They both made cards for her today and I thought that I could post them on facebook, but no luck. I will keep trying. Sheila Orr

Unknown said...

Lindsey...love those most recent pictures of you.....they are so sweet! And definitely disguise the toughness you have to do all you're doing! Keep your chin up young lady...you are teaching us all some lessons!

Anonymous said...

Perhaps a favorite entry! Pickle it is....Good eating Lindsey. I'd bet you're mom and dad would swim shark infested waters to get you a pickle as long as you keep requesting them. I am so proud of you Lindsey, keep being brave and praying to God. He will help you. I love and Miss you ALL!!! Love Aunt G

Anonymous said...

Lindsey I just came up with another rule for my middle school students.... No licking the toys! Lol I am so proud of you and how you are staying so strong, I can't wait until your whole family is back in North Powder and I get to see you and your siblings at school. Keep up the great work Lindsey. Love ya! Mrs Hamann. PS I live pickles too!

Dale and Mike Olsen said...

Silly Joke s for Lindsay (and Sierra... sounds like she could use some cheering up, too)

Q: How do you get an elephant on top of an oak tree?
A: Stand him on an acorn and wait fifty years.
Q: What if you don't want to wait fifty years?
A: Parachute him from an airplane.
Q: Why isn't it safe to climb oak trees between 2 and 4 in the afternoon?
A: That's when the elephants are skydiving.
Q: Why are pygmies so short?
A: They climb oak trees between 2 and 4 in the afternoon.
We send out love and continued prayers! Give my best regard to your Mom! Mike O