Lots of positive steps since my last update!
Ruby is still on the Airvo, and is doing well! She is coughing up lots of secretions, and her cough is getting stronger, which is awesome. They put her back on the vent with CPAP settings over night, just to give her the added support so she doesn't tire out and go backwards. She didn't have any signs of going backwards, but they wanted to be proactive.
They worked her up to 80ml feeds over the course of yesterday and she took all of it by mouth and took bottles through the night as well. Today she started taking her meds orally too, which is great! Hopefully we can ditch the ng tube in the next little while. She's on 50/50 skim breast milk and portagen formula, not sure if Dr. Horne approved that, but he's away for the week and the nutritionist Holly knows best. Glad she's getting a nice full belly now!
The milrinone and dexmedetomadine are both off, and so far so good. The milrinone won't be fully out of her system for a bit, so they will do a echo on Friday to check on her cardiac function without it.
They continue to slowly wean her sedation medications, and have taken her off of one of the medications for her pulmanory hypertension, since it's pretty hard on her liver. It could be that she doesn't need it now since her heart is working a bit better with the slowed heart rate, or she may need some oxygen since that is a good therapy for the pulmanory hypertension. We'll know once it's fully out of her system tomorrow.
The current goal is to move out of ICU on Friday morning, so they took me on a little tour of MSNU (medical surgical nursing unit) today in preparation. I'll be in the room with her in that setting and it will be a bit more hands off in a lot of ways. Been getting a lot of pep talks from the staff here in PICU, since we've been here so long it will be quite the transition. But it's a step closer to going home! Ruby will likely have a 1:1 or 2:1 nursing care, with her trach. They'll educate me on a lot of her care for her trach care, meds and if she continues to need subcutaneous injections for her anticoagulants I will learn to do those as well. Excited but nervous. Hoping we continue on that trajectory though! She looks good.
It's still unclear if she'll need the trach long term, or if it will just be a temporary thing. But cardiology will be making that call. If all goes well, we may be looking at going home in a few weeks. But not getting my hopes too high just yet. I've been telling Ruby that my birthday is June 9th, so hopefully she gets the hint!
Praying for more good progress, and thankful for all the positive steps so far! ❤️🩹🏥🫁🫀
