New attending. She is here through Monday. She took a very thorough look at Bella. We looked at nutrition as well as weaning from the vent, the methadone, and the diuretics. Her weight is down to 4.85 kg (10.7 lb). 7 month olds should not be in size 1 diapers. Failure to thrive is one big reason we are still here. Her PEEP is going down to 8. Her methadone will be discontinued tomorrow. And she wants to re-examine her diuretics, but she wouldn’t be an Attending if she didn’t. All attendings freak at her diuretics. We’ll see. I am hoping for good things – like successful baby steps towards home.
One crazy thing about all of these weans is their methods. We will decrease her PEEP until her lungs start to collapse, then we will know how high her PEEP needs to be. We will decrease her diuretics until her lungs start to fill up with fluid, then we will know exactly how much diuretic she actually needs. Isn’t that kinda like asking the question: How close can I put my hand to the fire before I get burned? Answer: I’ll move my hand closer and closer to the fire until I have a burn and then I’ll know exactly how close I can get to the fire. I wish there were ways to figure this out without putting her at risk. The good thing is these are the last few questions before going home. Yeah! They have to find her new baseline. Not an easy task.
Her pulmonologist says that she is doing so well that trach trials aren’t far away – I think the doctors need to talk to each other more. But I am glad that she is doing so well.
Bella had PT and OT today. We are already starting to see some improvements from the daily PT. One of her goals 2 weeks ago was: Hold head in midline for 10 seconds with minimal support. That was passed off today!
I meet the medical director of the home health agency we will be using. As well as the RTs for the new medical supply company we will be using. Someone asked me the other day if I just sit here all day, bored. That would be a “No!” There is always something going on.
Fun pictures of Bella today: