It turns out that the number of nights I can go without sleep without experiencing total emotional meltdown is 3.
If I had written my last update on Friday afternoon instead of that evening, it would have been all upbeat, I promise you. Annika was really looking great during the day. Then the afternoon came and she began hurting and her hemoglobin plummeted and I was worried about bleeding and having to send her back to the O.R. I think the fall was harder because she had looked so good during the day.
After such a great day, the IV pole next to her bed had filled rapidly as the doctors kept adding to her regimen. Soon her cluster of IV pumps was reminding me unhappily of her post-transplant times, with their long, hard recovery period. I was starting to think she would have to spend another week in the PICU. When a code was called again that evening in the unit, I had a few tears for the child I didn't know whose hold on life had suddenly become so precarious. That night the poor nurse who was given care of Annika had to deal not only with Annika and her complicated schedule of 50 gazillion IV med's, but also a mom who was clearly a donkey on the head
, as Annika would say. I got so upset with the nurse that I refused to abandon the lawn-chair-like seating by her bed for the fluffy-down-mattress-like-in-comparison fold-out chair across the room. Neither Annika nor I got much rest at all that night.
Jörg was supposed to leave for home Saturday afternoon, but once he recognized how very donkey on the head I was, he decided to stay for another day. I slept 2 hours that morning, and another 2 that afternoon in the room, my dreams mixing weirdly with the conversations of the doctors and nurses stopping by to check on Annika. Jörg, meanwhile, kept watch on Annika, also upset with how her condition seemed to have deteriorated from the day before. He had to wear a mask the whole time he sat with her, as he had developed a sore throat the night before. We were pretty certain that it was just the dry air and stress, but didn't want to chance passing on a cold to her.
That night I was determined she would get some good rest. At 9 I turned on her current favorite go-to-sleep song, Be Still My Soul
. This was a song that I put on the photo slideshow memorial I made for my Aunt Pat's
family, and Annika fell in love with it on first listen. I can't say that the lyrics are my favorite for listening to in the PICU, not being much in the mood for reconciling loss right now, but it put Annika in the most blissful state of relaxation. New Age music, morphine, and the humidifier on her nasal cannula bubbling zen-like behind her bed, she drifted off to sleep.
Through the night, she lost more tubes. In typical Annika fashion, none of them were removed on doctor's orders. At 10:30, I awoke to see lifting her urine catheter in the air, the large tube connected to the catch bag was caught between her toes. I untangled the tube from her toes, but a few minutes later the nurse and I realized that Anni had broken one of the connections on the catheter. "Wow. I've never seen that happen before," commented our nurse, a long-time PICU veteran. Thus was the urine catheter removed.
Then around 4a.m., Annika pulled her nasal cannula off her face, apparently still asleep. Amazingly, her oxygen levels stayed around 90%, so the nurse just left it off.
So I'm hoping for a good day today. Jörg is leaving as soon as I return from doing some laundry (it's in the dryer now). And I hope we'll be out of the PICU and back to the regular floor perhaps tomorrow.