To recap, I took Emily to the ER on Friday night. They ran cultures, sent us home early Saturday morning, then called us back Saturday afternoon.
Well, this sure wasn't what we were expecting. We were transferred to the hospital that placed the port, where our Rheumy is. We had several appointments on the agenda for today, but they all went out the window. My son was to have a new patient appointment with our Rheumy, Emily was supposed to have her IV meds and an appointment with a gastro doctor. Instead they transported her via ambulance while I took our van so that I would have a way back home. We got here very early in the morning. We saw an attending doc last night who is trying to coordinate everything. Today her Rheumy came to update us. They started her on IViG to help boost her immune system. They are doing their own cultures here and debating what to do with her port. The surgeon & the gastro doc are supposed to come see her. The surgeon and infectious disease departments will confer next. They say that her type of staph is generally very responsive to antibiotics, so they may just continue the strong antibiotics and leave the port alone. Either way there is a risk. I would prefer not having to put her through two more surgeries.
And so we wait. Wait to find out the plan, wait on her immune suppressing meds that keep her pain, stiffness, and joint destruction under control. Wait to go home and back to my wonderful hubby and children. On the bright side she's actually pretty happy. She's been in a great mood, silly and all.
We would appreciate all of the prayers that we can get. She's acting so great that it's easy to forget how sick she really is.
Edited to update that the nurse just informed me that there is blood in her stool. I had told the docs that a couple of months ago, but we thought increasing her stomach med would help. Guess not. Hopefully GI will come tomorrow.
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