#I get to work from home every other day for the next week 🙌 which I am treating as a mini vacation

[robotpals]

My work-from-home assistant

[babygeorgia]

7/28/23 2:30 PM

Sorry for the lack of updates, it’s been so so crazy but uneventful at the same time. I’ve been working on getting some sleep with my spare time.

Georgia is really doing quite fantastic though 🙌

Her liver enzymes and bilirubin is completely normal for the first time in recorded history, which says a lot since she started getting frequent lab work when she was about 6 weeks old.

One bump we’ve had is her glucose has still remained wonky. Since she has a working liver, her liver should be able to release glucose when she goes a bit without feeding, but it has frequently been low - not dangerously, but I also have had to feed her every few hours throughout the day and night, even with her being on IV dextrose. This has left little sleep for both Georgia & Mama.

They got endocrinology involved to help figure it out. They just completed a 16 hour ‘safety fast’ - basically seeing how long she could go without eating or IV fluids before her levels dropped very low.

So, she stopped eating and was taken off IV dextrose last night around 9pm. Amazingly, her glucose suddenly started to even itself out even without any extra help! It did not last the entire 16 hours, though she went about 14 hours with normal levels until her levels dropped dramatically. I think it’s encouraging considering there’s no good reason she would ever go that long without eating in the first place 🤷‍♀️ they had to let her levels drop very low in order to take labs that would be accurate, to make sure she doesn’t have anything else going on making her hypoglycemic. I think those take a few days to come back.

Anywho, we are nearing being able to be discharged, hopefully next week. They want to see her gain weight. They also wanted to find just the right dose for her immunosuppression, which seems we just found that balance. She is highly immunosuppressed right now, and will be for the first 3 months and will gradually go down over the course of a year, to a point where she will be just immunosuppressed enough to keep her from having rejection, but not so high that she has constant issues with infections and cancers.

While we look forward to discharge after 2 months + of consistent hospital stay, we still have no idea where we will be staying or any other logistics since we have to stay in the area and away from home for atleast 3 months for follow up appointments. We are trying to work out the finances in hopes we could get somewhere with a kitchen, because it feels very unsustainable to do anything otherwise. Unfortunately we’re in one of the most expensive areas of the US!

Thank you for the support 🙂🙏 We’re so happy and blessed to share Georgias good fortune with everyone who cares. All will work out! She is happy as can be.

🐝🌻❤️