Wednesday, September 28, 2011
September 27, 2011
3 months, 3 weeks, 1 day since diagnosis
day #7 of current hospital stay
days until transplant - 3
Riker has been crying nonstop for hours. I finally got her settled down to sleep but it has been a very difficult night and a very difficult day. Maybe more so for me than her. Her food intake has gone down so they decided that it would be helpful to supplement her bottle feeds through NG tube. I am disappointed that she's not eating like she should but not surprised and not against tube feedings. We've been through all this before. Plus she won't have to taste all the awful oral meds they are giving her all day long.
Riker did NOT like having that tube in. Not that anyone does, least of all babies. However, the tube was a lot bigger than last time and it did not agree with her. She could not drink her bottle because the tube made her gag. She tried so hard, too, gagging and screaming between drinks. I hoped that after she slept a while that she'd get used to it. She's on regular doses of Ativan for the nausea and it makes her feel pretty good right after it kicks in. I thought she'd have an easier time taking a bottle then. It did not help. And she did not get used to that tube in her nose.
For the last 3 hours, she's been screaming. She's been screaming for so long and so hard that her eyes are swollen shut. Riker never cries anymore. Not unprovoked and for long periods of time, anyway. She is always easily consolable and can usually calm herself down. It was physically painful to listen to her cry like that and watch her struggle with that tube in her nose.
As I tried to comfort her, I, too started to break down. This is the first time I've cried about Riker in a while. When the nurse finally came in, she handed me a box of tissues and took Riker from me. I felt like an idiot for crying over my daughter's struggle. This just added to my feeling of complete isolation here. I have no one. This place is so cold and there's no one here to take care of me. I sit in this dark room all day and most of the time I forget to leave at all.
I knew the nurses would be busier and less attentive here. Most of the time it doesn't surprise me at all. They are constantly administering meds and taking vitals. I was not prepared, however, to listing to Riker's monitors going off for 45 minutes at a time even though I've buzzed out to tell them. I was not prepared to spend hours on insisting that we get Riker ready for the bath they require her to take every day. I was not prepared to have to track someone down to put my milk in the freezer for me and irradiate bottles for Riker. These nurses are beyond busy.
I've hit a low point. I'm so lonely here. I miss my family so much. I miss my Valentine, I miss my husband, I miss my friends. I miss having support and I miss having breaks.