Day -8

This morning Gracie had surgery to place a double lumen central line. She did really well with it and after that she had an EGD to scope her throat and esophagus to see why she keeps throwing up everything. They found that she had a severe esophageal stricture. Toward the bottom the opening was so small, a pen couldn't even pass through. This is why she would puke up bite by bite, it couldn't go down to her stomach. She has been so hungry this week and wanting to eat and it has been so frustrating for her. The doc did a balloon dilation to widen the opening and she was a lot better after that. She had a barium swallow done to make sure everything was good and it is, she ate two bowls of cereal and some applesauce. We are now in her BMTU room that she will be in for the next month or longer. Today is called day -8. Transplant is considered day 0 so right now we are counting down. Tomorrow she starts her Intense chemo and it will run for 4 days around the clock. she has to have a daily bath and physical therapy, she also has mouth care 4 times a day, she just had the first mouth care and she wasn't too happy about it but of course she did it and held still like always. The nurse was so impressed cause they have to hold kids down all the time. They were so impressed with her during the barium swallow as well. She just amazes everyone. she is in pretty good spirits so far but I can also see a lot of anxiety. She is so smart and doesn't miss a thing. I also try to explain everything that is going on so there are no surprises. today is daddy's birthday and he will stay the night with her tonight and leave tomorrow afternoon to head home for work. It has been so great to have him here with us. He will come back next weekend.
The unit here is pretty nice and they bring a food tray for the parent when they bring her tray as well. She is on a low bacteria diet and has to eat her food within 30 minutes from the time they bring it. Her food is made fresh when it is ordered so she isn't allowed to eat off the parent tray cause it might not be as fresh. :) we have already watched sleeping beauty, tinker bell, monsters Inc and my little pony and she did some puzzles.