The doctors have rounded – interesting how my life hinges on that daily meeting.
They would like to see her get off of oxygen, but if her right ventricle would be more happy with O2, they are amiable to sending her home on it.
She is now in drug rehab. She has had so much narcotics for so long that they have to wean her from them. They tell me I’ll recognize withdraw if I see it. From what they describe, it looks like heart failure, irritability, sweating, diarrhea. Fun – this will be a long process that may continue at home.
She needs healthier lungs. Today’s x-ray looks better than yesterday, but that is no promise that tomorrow’s will be another improvement (as much as I would like it to be). The doctor told me that she has very sick lungs. The IPV (breathing treatments) will continue. (poor Bella) This is definitely something everyone can pray for – that her lungs stop filling up with fluid and collapsing.
They are going to change her lasix to PO (by mouth). The goal is to get all of her meds to PO since that’s how I would give them at home. Since PO lasix is not as effective as IV lasix, we’ll have to watch her output. The last thing we want is for her to have insufficient output and fill up her lungs again.
And….they want to start treating her like a 4 month old baby, instead of scheduling all of her feeds. They want her to eat when she wants, how much she wants. Ugh! Good and bad news. The good news is this is a step forward. The bad is that Bella hates her formula. I asked them if we could change it and was meet with a resounding NO. They want to wait 6 weeks after her chylis was present before they take her off the envaport. The problem with envaport is it tastes nasty (and it stinks!). At first she was so excited to eat, the last 24 hours, she is eating, but turning up her nose at this formula. (How do you know she doesn't like it, Shelly? The scrunched up face and the tongue sticking out are a pretty good indication.)
As far as a timeline, MAYBE the end of next week. Maybe.