Tuesday morning they told us that she was doing well so they were going to move her up to the 3rd floor. She was really happy and doing really well. She ate and sat on my lap and we read her books, and she slept. They had to get blood from her that day for surgery. I left when they did that because it is always a disaster. It seriously took like 3 hours to get it and they still didn't get all they needed. I kept coming in thinking they were done, but the weren't and I could just hear her crying. Finally the attending doctor came around for rounds and told them that no one could poke her or bug her for the rest of the day and night until her surgery. Thank goodness! It's so frustrating sometimes!
Late that afternoon around 4:00 they finally moved her. I don't know what took so long. They kept saying they were waiting for a room at that point I don't know why they even bothered moving her because she was getting surgery in the morning, and just going straight back to the CVICU. But they moved her anyway.
We got up to the 3rd floor and it was a shared room. Right away I wan't happy about it. She was at the front of the room and their were literally 7 different people walking in and out of the room for the other patient, and they have to walk right by Aili. I was so pissed. After all we had done to keep her away from people and healthy before her surgery. She has a bunch of strangers, adults and children in her room walking past her constantly. I was really upset. Chris's parents where there and when the nurse took us to walk us around the floor Chris's dad told the nurse that we were not happy. That they hadn't even seen this baby as the grandparents and now we had this whole room sharing mess the night before surgery. The nurse said she would see what she could do.
When we got back to the room a doctor came to talk to us. She asked if we had any questions or concerns. I told her how we were feeling too. And of course I can't talk about my feelings without crying. We didn't think anything would change at this point though. Aili fell asleep and we left to go get some food in the cafeteria on the ground floor at about 6:00. At 7:00 they called me and said she was awake and really hungry. Poor thing was crying really hard when we got up there. I fed her and she calmed right down. I felt really bad that she was screaming when there was another child recovering in the same room, but it wasn't my fault. They whole shared room thing is the worst idea ever.
After I fed her Chris and his parents came back in and we got Aili to fall asleep. We played her her going to bed music and she had just fallen asleep when the nurses came in and said we were moving to another room. Great, but worst timing ever. So she was woken up as we moved her to the other room They put us in the isolation room. The room that they put the sick kids that can't get the other kids sick. It was open so they put us in there. I kind of felt like the lame, complainer for a little bit, then got over it, because the room was nice and big. I didn't have to go into the other patients side of the room to share their bathroom in the middle of the night. We had a nice bathroom all to ourselves.
Once we got settled, Aili fell asleep and then I was so tired and ready to sleep too. Chris left and I feel right asleep in the couch/bed in the room. Some nurses came in a little while later and asked me a question and I remember responding, but can't remember what they asked or what I said. I was so tired and out of it.
Aili had to stop eating by 2:30am. So I fed her at 2:00am. Around 4:00am she started moving around and crying. I needed some help with her and was looking for the call button to call the nurses. There was a red button on the wall that said, "Staff Assist". Since I couldn't find any other button I pushed that one. Yeah.....not the call button. I realized that right after I pushed it and could her an alarm sound out in the hall, and 3 nurses came in REALLY fast. I felt kind of stupid. I just told her she was thrashing around a lot. But they turned on the light and she just looked at me and smiled. Later I saw the real call button tucked away. Oops!
So once they came in after I pushed the wrong button we started to get her ready for surgery. They started her on some IV fluids, but she was moving around so much that the IV was actually pulled out of her hand. They gave her a little "bath" to try to get her as clean as possible before surgery. It wasn't a great bath, and the weird no rinse soap they use made her smell like playdough.
Chris came around 5:45am, and his parents came around 6:15am. Chris and his dad gave Aili a blessing before they came to take her down to surgery. We thought they would take her down around 6:30 or 7:00, but I don't think they took her til like 7:30. I felt so bad for her because she was SO hungry and really tired. So Chris just held her to keep her calm. I couldn't hold her, because then she would just want to eat and she couldn't.
They finally came to take us down to the ground floor where they prepare to take her for surgery. We packed up all her stuff and rolled her in her crib down the hall, into the elevator, and to the ground floor. She cried all the way down, and we couldn't do much for her. It was so sad. It's so hard when you can't do anything for them.
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