She is of the vent! Awake, and just has the regular nasal cannula with o2!
And her o2 need is just 1l./h.
On friday night our other 5.5 yo. came to visit, they have this special twin-bond, and he wanted to lie down in bed with her. We changed his clothes to hospital ones, and used antibac on his hands etc. to make sure he didn't give her any bacteria (he's 100% healthy of course), and we let him. He snuggled close to her, and was holding her hand, stroking her hair, singing to her and telling her stories.
And her o2 need went down, and her pulse came down a little (like we see when we do that too). And he slept in the hospital with us, and was with her the whole day on saturday too, and she improved tons. We stopped (gradually) the meds keeping her sedated and she started breathing a lot against the vent, and moving a bit.
And today she woke up, and was tugging at the tube and stuggling against it, so the nurse just quickly extubated and put her on a nasal cannula and it all went very well!
I think her brother helped, of course her meds helped too, but you know. Combination between good care/meds and feeling so loved by us all, knowing we were right there with her believing in her.
This has been such a wonderful day, I picked her up right away when they got the tube out and her nasal cannula on, and she snuggled close to me and it was so wonderful to hold her again!
My dear and her siblings have all been here now and it was such a joy watching them all being so happy to see her again, and her them. Lots of snuggles and kisses. We just lover our little bunch so much.
New tests today showed she is getting much better (crp is way down to 80, from 230). And of course, breathing on her own is good.
We're waiting until we're sure that she is completely rid of the pneumonia and then we're having a new chest ct, her lungs looked so terrible on the last one we want a doubble check, even with the "scars" from pneumonia, they can tell that apart. And then we have to think about what we're going to do about treatment, she is on much stronger and more meds now than before, and we're not sure how much she will need now.
She's tired, after the visits she went right to sleep and slept a few hours. And we haven't done much after that, just read and talked in bed mostly, and played cards. That's, of course, expected, she's been through a lot, and is still sick. Needs time.
We're going to try going back to just using her GJ-tube for J-feeds, and not giving her the TPN in her central line, to see how she responds. We're not taking the line out, she needs meds in it and will continue to for a long time probably, so we're going to keep it and go home with it. But we'd rather have her on just her ketogenic diet with the J-feeds.
It's good to have some really great news to share with you wonderful mamas out there, I'm so grateful I have you, and for all your kind words, hugs, prayers, thoughts and vibes going our way!