Amelia got her tube out today. Her face is red where the adhesive was, but it is out, and she is so happy that it is out. We have been told that Friday will be her last day there. She is eating again, she is able to bite, chew, swallow, which was their goal, and she is doing that.
The Bad:
Katherine is very concerned that Amelia is NOT eating enough to sustain her weight without the tube feedings any more. Since we took her off tube feedings, her weight has gone down from 67.6 lbs to 65.6 lbs. We don't know if this is within the expected range or not, and if this is going to stop soon or not. We don't know when this is supposed to level out, and she is supposed to be back to sustaining her own body weight. In spite of Friday being her current last day, we don't know if her vitals tomorrow will track with that or not.
The Ugly:
So much tomorrow will depend on her vitals and what her current weight is. We have been told by the doctor that we want to get Amelia eating 100% before she goes home, but by the nurse we have been told that she is swallowing again, and THAT was the goal, and she is ready to go home, even if her weight isn't maintaining.
From the doctor, we have been told focus on crunchy foods, get her used to eating things with texture, not mechanically processed soft foods, and we want to get her back to 100% of her food intake orally. The nurse and nutritionist tell us however we can get calories into her, whether that is a smoothy, yogurt, etc...
Tomorrow, we are gearing up to possibly have to do some battle with the clinic to make sure Amelia is here as long as she NEEDS to be, not just how long they think they need to keep her.
Prayers for tomorrow, for a good outcome, for God's guidance with whatever may come. We want to get home, we want to get back to regular life, but we want Amelia to be back to eating enough on her own as well before that.
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