One of the toughest things about life in the PICU is that just when you’ve gotten used to a doctor or their approach to her care, they change. Not only has the head of our team changed, but so have the doctors in infectious diseases and some of the residents. In some cases this means learning new names and faces, but in other cases, it can mean a complete change of game plan. Which is frustrating, because just when you think you have the game plan under control and know what’s going on, it can change. I suppose this can be a good thing, as fresh perspective is always a good thing, but it’s also frustrating.
There’s not a lot of new things to report today since her weekend was quiet.
Elanor knocked out the IV in her hand, and there’s a discussion under way as to what they want to do about it. For her it isn’t as simple as just putting in a new IV line–she’s had them try so many times that most of the veins that they’ve tried can’t be tried again–scar tissue forms and it’s much harder to get an IV into a vein that has already recently had one. They are thinking about using her jugular to put in another central line–and Ravi and I aren’t the biggest fans of that idea.
They are changing her blood pressure medication from an IV medication to an oral one that she would take twice a day. I don’t know how long the game plan would be to keep her on it, but the doctors assured us that they won’t let us leave until we feel safe with everything we need to do for her at home (whatever that might be).
We haven’t met with occupational therapy yet, but we are on their radar for today so we shall see.
In other news, her cry has gotten to the level of piercing. I think we are some of the only parents who enjoy hearing her cry…in that we did not hear her voice for days, and now that we can, we are happy for what it means (she’s alive, and she’s getting stronger).