Yesterday was the 6 week mark of Avery’s stay at Kapiolani. I would have written something then she made sure that I wasn’t able to do anything I wanted to (write this entry) or anything I didn’t want to do (grade essays) all night.
Avery usually falls asleep between 8 and 9 so I have some time to take care of business. Last night, however, she decided not to go to sleep until 10 – and that she wanted to be held every minute until then. I didn’t take my dress shoes off until 10. I didn’t shower until 10:15. When I turn the water off I could hear Avery screaming from her bed. I rushed out to calm her down. Fifteen minutes later I put her back in the bed but her eyes were still wide open. Luckily she didn’t cry. She just kind of stared at me through the dimly lit room.
This morning as I left for work Avery’s nurse told me that she threw up at 11 PM or so and that her feeding tube came out as well. He said she didn’t go back to sleep until 2 AM. This was news to me, but it wasn’t the first time I heard it. I think he tried to tell me about it as it was happening, but I was 3/4 asleep. I know he said something to me, that they had to take Avery into another room. I said OK. And that’s the last thing I remembered until this morning. I don’t know. I’m exhausted.
Avery’s been fussy during the last week and I think that’s because she’s more aware of what’s happening and she wants to go home.
She despises her bed and if she even suspects any one of us is going to return her to it she throws a tantrum. She tracks hospital staff around her room and whines if they get too close to her. She screams if they touch her. It’s hard to blame her.
I’m also ready for this to be over. My mind is mush. I noticed that I’ve been zoning out on people in the middle of conversations. It’s harder for me to prevent pieces of my sarcasm and stupid sense of humor from seeping out. I miss my family.
It feels like we’re so close to taking her home. This past Sunday we had a training on how to use a pump to feed her when we leave the hospital. Avery’s on her last round of antibiotics. The doctors have been saying – but not promising – that maybe, hopefully she’ll be out on Sunday or Monday but those statements always end with “…so we’ll see.”
So. I guess we’ll see.