The three of us made our weekly family trek to the hospital where, miracle of miracles, Sarah was almost pretty good most of the time. She didn't get to go to the playground (at the hospital) because of all the waiting for the doctor and/or nurse practitioner and hardly whined at all and amused herself by lounging across my lap on the "tall chair" (the one high enough to let her see into the isolette). She had picked out a book for Jane yesterday -- Is Your Mama a Llama? -- which we read repeatedly. Jane seemed to like it a lot. She high satted the entire time I was reading to her.
Jane had a good night last night and a pretty good day today. Her oxygen was down in the 50s and 60s last night, mostly in the 60s and low 70s today. They still don't know if she's got pneumonia, and the cultures aren't showing much. Again. Because that would be easy and if there is one thing Miss Jane is not, it's easy. (Let us hope this remains true for her ENTIRE ADULT LIFE. Okay, I don't think I want to think about my 5 week old's potential future sex life anymore. Ewww!)
We had a chance to talk with the attending briefly (see: waiting, above) and he simply said "Jane is complicated." She hasn't really done much they've expected her to do. He also said he was "personally devastated" by this downturn, which is not exactly what you want or hope to hear from your kid's doctor. I had to leave to take Sarah for an ill-timed trip to the bathroom at this point in conversation. PERFECT. But, um, yeah. She's not easy to treat, she needs slow and gradual change, and they're treating her with so many things at once that they're not sure what exactly is working when she shows improvement. Well, then. Thanks for the talk!
On the plus side, she's still gaining weight (3 lbs, 2 oz last night), she still looks and acts well, and she's being weaned off the morphine (which they used to wean her off the fentanyl) with no ill effects, for an exciting change of pace.
Sarah and I are home for the next two days while we wait for her daycare to reopen. On Wednesday she starts PRESCHOOL. Can you believe it? In the meantime, if any of you invisible readers have questions about Jane or the ICN or other aspects of our shiny new life, ask away!
1 comment:
Ever since I was a little girl, I never thought of roller coasters as a fun ride. As an adult learning how to navigate the health-care system for my then-chronically-ill parents, I realized nothing is ever black and white. So often in the last decade, I've thought of medicine more as an art than a science. No easy answers; no crystal ball. But, having said that, it is amazing what CAN successfully be done for both old and young. In this case, my money is definitely on Jane. Lots of pluses here, particularly the weight gain (imagine me thinking that a plus - yes, I'm overweight). Also appearance and behavior sound very positive. I'm so sorry you're all being so challenged here, but I'm guessing it's Jane's way of preparing you for the terrible twos. Moving into the big-girl bed may be the least of it. She's one tough little cookie. Love and prayers. Ann
Post a Comment