4 months, 1 week, 3 days since diagnosis
day #23 of current hospital stay
I had a lovely day with Valentine today. And I needed it, too. By the time the weekendRiker comes around, I am so drained and depressed, I don't feel like it will ever get better. Then I see Valentine. Each time I see her, she is bigger and smarter and more grown up. I am missing so much. She talks so well that sometimes it feels like I'm taking to a little adult - the cutest little adult you ever met.
Riker responds so well to her big sister. It is amazing how much they adore each other. When Valentine is with Riker, I don't exist. And to Riker, Valentine can do no wrong. Riker HATES to be messed with but Valentine can be all over her and she is so content. Valentine sang to her, "little Riker, little Riker, it's alright, it's alright - Valentine is here now" :) She looked up at me and said, "Mom, isn't sha a darling?" Yes, Valentine, she is.
The goodbyes were slightly less painful today. Coming back to Riker was more painful. She's had difficulties keeping her O2 up where it needs to be. The bleeding is extensive and obstructing her airway. With oxygen blow by and some adjustments, she is able to get it back up where it needs to be but the alarms are going off frequently.
The doctors were concerned by the excessive bleeding and thought it may have to do with her liver. Her bilirubin was up today, her liver is enlarged and she's gained 3lbs in excess fluids. These are all early symptoms of liver failure. Tomorrow, they'll get an ultrasound of her liver to see if it gives them any additional information. It is possible that she has something referred to as VOD. I googled it was too scarey to read much. I closed the window before I had a panic attack. Hopefully she won't have it and I won't have to read the rest of the information.
Tonight, her respiratory rate is up to compensate for the low O2 saturation. The alarms continue to go off and she continues to wheeze and gasp for air. I haven't really slept in days and I don't think that's going to change anytime soon.