Sunday, October 16, 2011
October 16, 2011 - Day 15
4 months, 1 week, 4 days since diagnosis
day #24 of current hospital stay
The nurse woke me up at 5am this morning to tell me that they had ordered an x-ray to check Riker for pneumonia. Riker's oxygen saturation had declined dramatically overnight and she was breathing very fast. Thankfully, when the results came back, it doesn't look like she has pneumonia. She does have fluid in her lungs but they cannot see infection. She's so swollen and all that fluid is taking it's toll on her body. She needs to start peeing more of it out than she's taking in.
Her liver is still enlarged and her biliruben is still elevated so they ordered and ultrasound to look at her liver. We waited all day for the procedure and results but the liver looks perfect. They still haven't ruled out the early stages of VOD or possible adenovirus which they will test for tomorrow with mucus cultures.
Right now it's a waiting game and I'm in hell. I am in a constant state of depression or anxiety. I am on the verge of tears and withdrawn and lethargic at the same time. She's on day 15 - counts should recover around day 20. I keep waiting for the decline to be over and for her to start getting better but it just doesn't seem to be coming! Everyday, it's "maybe tomorrow." ugh...
Today Riker is 8 months old. She has spent over half of her life in a hospital. Our lives have been turned upside down for over 4 months. Jon and Valentine have been separated from me and Riker for nearly a month. I should stop counting the days and the months but I cannot. I want to get off this roller coaster and I want to go home.
We've made some progress on finding a home, too. At least we're making steps forward, there. Jon and I have decided we'll try to find a home that already exists if we can have a full inspection and retrofit with whatever Riker's requirements are. That allows us to get in a new place quicker and widens our options. Now we just need to find a really really good house inspector.
I am going to push a lot harder with the doctors for answers tomorrow. I need to know what her requirements will be when she goes home so that we know what to look for. We cannot wait any longer for answers.
With any luck, Riker and I will have a place to call home with the rest of our family before the holidays. I so badly want to be with them - safe in our own home. <3