June 21, Day 2, Long night...Bad day

10:30am
Long night.  She didn't tolerate the medicine adjustment very well.  We had to drag her on her evening walk.  Did not want to go.  We are talking about a lap around the unit, not very far, she was just not feeling well.   At 10 pm last night she started getting tummy pain, but went away. 
At 4:30 am Stacy and I got a phone call from the nurse.  She was throwing up and wanted her Mom or Dad.  I threw on some clothes (of course, da) and ran over.  Since then she has vomited about every 20 minutes or less, and was still going at it when I left at 9:30. 

They were hoping she wouldn't have this reaction after dropping the dopamine, but obviously not.  They have now turned the dopamine back on and hopefully today she turns around.  For now even if she has 'good' days the Doctors want her in the ICU for at least 5 more days.
Now when I say she has a 'good' day that means she may eat a small bowl of cold cereal, and a small bowl of spagetteos to eat all day.  She would go on 2 walks around the unit, and no tummy pain. Other than that she just stays in her room and either lays in her bed or sits in the chair.
Stacy is doing a great job trying to keep Lindsey busy.  They are writing thank you cards, reading books, playing games, painting her nails, and reading through all the wonderful cards Lindsey's fans are sending.

Yesterday Lindsey was 'officially' listed on the transplant list.  There had been some paperwork issues and reports that were holding it up.  The catheterization on Tuesday and related report was the main thing holding up the listing.  I guess the ICU Dr. called the insurance company 3 times and I even called a couple of times. She was listed yesterday afternoon.  I guess the squeaky wheel really does get the oil.

I have started to spend a little more time back here at the RMH (Ronald McDonald House) to try to get a little work done. Have to see how today goes. I told Lindsey if she can start feeling better, I will come back and play the wii with her. Child Life brought in a TV and wii system in, just have to see how she does.

In the back of my mind I know she will make it thru this.   I am just assuming if Sierra could make it thru this, then she should too. Hope my Mom can relax and enjoy her trip with her sister.  She is going to Europe with her sister, Jerry for 10 days. Should be a great experience for them.   But I also know the horrible pit you get in your stomach when there is bad news, especially when you are so far away.  I just know Lindsey is exactly where she needs to be, the Drs are watching her close, and Stacy is cool around her.

It was good to have Gage and Sierra here this weekend.  They both have Dr appointments next week.  Regular check up for Sierra, medicine adjustment for Gage. Lindsey said she doesn't want to play with them yet, but maybe after she feels better.  Good to hear Lindsey talk to Sierra and compare stories.  I think Sierra is a real strength to her and her parents.

Met a family from Adrian, Oregon, Cade and Stephanie Thomas.  They were surprised we were from Powder Valley.  They have an unborn child who has heart problems.  When the baby is born, it will go to heart surgery.  They have a 2.5 year old boy who Gage will be able to play with.  So be grateful for your healthy kids, you see some crazy stuff here.

What is hard is how this is going to start dragging on.  Lindsey has been here exactly 1 month today, and on the transplant list for 1 day.  They are saying that it could take 3-6 months for a donor heart (that is 90-180 days) uggggh.  They are not talking Burlin Heart yet, but if she doesn't turn around today, it won't take long. May try to go home for a bit next week, not sure yet, just have to see.
I will update as needed.
Sorry to ramble on. I am treating this as my diary of Lindsey's story.