Norah's record for tolerating the home ventilator came before she had two trips to the OR, and before she came down with ventilator associated pneumonia in December. It was 13.5 hours continuous hours. She still hasn't beat that, but she is finally back on track. For the last couple of months, she has only been on it for 4-5 hours at a time. However, she is now tolerating 10 hours every day.
The plan is to re-evaluate her every two weeks, and increase her time on the home ventilator by one hour if she can tolerate it. With as well as she's been doing, I'm hopeful that we won't have a problem bumping her up when it's time. That is... so long as we don't have any sort of setback like we seem to keep having.
So she's that much closer to being able to come home. The unfortunate thing that we just found out, is that the FDA's rule for using the Trilogy (her home vent) at home is that she be 10 kg (about 22 lbs). Right now she weighs in the neighborhood of 7 kg (15.4 lbs), so we still have another 3 kg to go (6.6 lbs). That is a LOT for her. So we may not make our goal of getting her home by the time she's two. But we can still hope.
We have quite a few resources to help keep her weight gain on track. It's a little tricky, not only because of her skeletal dysplasia, but also because her work of breathing burns quite a few more calories than the average child her age or her size. Her growth goals are half that of a child her age. She still gets pretty much all of her calories from her g-tube, and we'll probably have it for quite sometime. I'm not so worried about it though. To be honest, it is really convenient. Of course we are still working on her oral feeds, but I'm quite the advocate of g-tubes when the application is right. We're taking the gentle approach with Norah. We encourage her (she LOVES Cheerios), but don't push too hard when it comes to anything oral. It isn't easy for her, and we don't want to push so hard that we end up going backwards.
I'll keep you all updated on her progress with the ventilator. Hopefully we'll continue to move forward!
The plan is to re-evaluate her every two weeks, and increase her time on the home ventilator by one hour if she can tolerate it. With as well as she's been doing, I'm hopeful that we won't have a problem bumping her up when it's time. That is... so long as we don't have any sort of setback like we seem to keep having.
So she's that much closer to being able to come home. The unfortunate thing that we just found out, is that the FDA's rule for using the Trilogy (her home vent) at home is that she be 10 kg (about 22 lbs). Right now she weighs in the neighborhood of 7 kg (15.4 lbs), so we still have another 3 kg to go (6.6 lbs). That is a LOT for her. So we may not make our goal of getting her home by the time she's two. But we can still hope.
We have quite a few resources to help keep her weight gain on track. It's a little tricky, not only because of her skeletal dysplasia, but also because her work of breathing burns quite a few more calories than the average child her age or her size. Her growth goals are half that of a child her age. She still gets pretty much all of her calories from her g-tube, and we'll probably have it for quite sometime. I'm not so worried about it though. To be honest, it is really convenient. Of course we are still working on her oral feeds, but I'm quite the advocate of g-tubes when the application is right. We're taking the gentle approach with Norah. We encourage her (she LOVES Cheerios), but don't push too hard when it comes to anything oral. It isn't easy for her, and we don't want to push so hard that we end up going backwards.
I'll keep you all updated on her progress with the ventilator. Hopefully we'll continue to move forward!
My fingers are crossed for you guys! xoxo
ReplyDelete