Getting my update in early today-- Matt reports that Mollie's temp went up and down all night long, but WBCs are up to 0.7 with an ANC of 550 (above the 500 mark- yay!) and her lungs sound good according to Dr. Vega.
Today, she will get a dressing change and they will also change the needle in her port. None of us are looking forward to that, but I know she can handle it. Plus, she'll get another neupogen shot. This definitely calls for something from the present box- it's almost empty after all she's been through recently.
Also on the menu for today are a bunch of phone calls (& probably visits) to our other doctors. Lucy and I are both considered "high risk" for H1N1. My OB just got doses of the vaccine on Monday, so she will probably recommend I get mine and start me on Tamiflu. Lucy's ped doesn't have the vaccine, but may start her on Tamiflu as well and send us on a wild goose chase to find vaccine for her (she is supposed to get the shot, not the mist b/c it is live attenuated). And then Matt will also have to talk to his GP. This is when I wish "family-centered care" actually meant medical care for the whole family. We've been getting little sleep as it is, and now we have to run around and deal with this. I think I might be feeling symptomatic already (although I might just be tired).
Mollie will also get a red blood cell transfusion today. Now that they know the cause of her illness, they will give her the blood to improve/maintain her oxygen transport and just generally to help her feel better. Her hemoglobin has been low for over a week now, so this should really help. At the moment, she is very happy. She is disconnected from everything- no tubes, monitors, needles, etc. and her temperature is only slightly elevated.
Worst port access ever. We had to hold down her arms and legs and they stuck her 3 times! But she's doing better now. Unfortunately the neupogen shot is coming in a few minutes. Fever is still down and she's coloring and working on some school work. We tracked down Tamiflu for the rest of the family and Lucy and I are going to get our H1N1 shots this afternoon.