Ruby had a pretty good weekend! Lots of time with Tom and Lizzie, and lots of naps and feeds.
She is doing great taking feeds and meds orally, so she had her ng tube taken out this morning. So nice to see her sweet little face without a tube in the way!
She will have her PICC line removed today at some point, but after a busy morning she is taking a well deserved and much needed nap!
I spoke with cardiology this morning, and they said what's really keeping us here is the trach. A lot of what they're dozing could be done as an outpatient through their clinic.
So hoping to have word from ENT as to a plan for things soon. She will probably trial on an HME at some point today as well.
Hematology still has to give her case a good review, I've got more comfortable with the injections but hopefully they won't be necessary for too long. Could be 6 weeks or 3 months.
It's all a lot to learn, but if it gets her home, then it's all worth it.
Feeds wise she is doing good, taking in lots and as they dial back on her diuretics we should see more gains. Overall she looks really good and all her sites are healing well, which is a good sign. They will likely set a minimum fluid intake, but that's more to make sure she is getting enough hydration going forward. She'll be on the formula/skim milk until June 16th, and can resume normal feeds after that. They'll do a chest ultrasound after a few days on regular breast milk to make sure all is well.
