Not going to happen...

I talked to the doctors today about the possibility of bringing Maddy home first and bringing her for the hospital as an outpatient for the MRI/bronchoscopy but they said it wasn't safe to bring her home. Even though she's been stable for the past few weeks already, because her trachea is so narrow, it would be very easy for it to become blocked. If it did become blocked for whatever reason (eg, a common cold could be dangerous for Maddy), they may need to take emergency action such as giving Maddy an emergency tracheostomy. 

The good thing about the CT scan is that now we know exactly where the narrowing is, and we know that the rest of her airways down into her lungs look ok - so if Maddy DID have to have a tracheostomy, it would completely bypass the problem area and hence (hopefully) solve the entire problem. However I'd prefer if we could avoid that altogether!! I guess that's one thing I can remind myself of - that if her being kept in hospital as a precaution prevents her from needing a tracheostomy, maybe that's a good thing. And it's definitely a good thing that they know what to do if Maddy's small trachea does happen to become blocked for any reason...

I've got mixed emotions about the whole thing. I am happy to know that Maddy is there for some kind of "medical" reason beyond just waiting for the tests - but I'm still frustrated at how long everything is taking. They booked the MRI for September 15th, two weeks away. And that's not even going to assess her airway (the main problem area) at all. So we've got a long wait to have any kinds of answers about what we're doing next. 

The doctors are going to have another meeting with the ENT and orthopedic doctors next week to discuss whether this approach (MRI and then bronchoscopy after that) is the best for Maddy - and given their past track record, I wouldn't be surprised if they end up changing it up again!

I really don't relish the thought of Maddy being in hospital for two months or longer, all up - but like I said in my previous post, I need to do what's best for her, not what's best for me... and I know that even though it doesn't always seem like it, the doctors aren't my enemies who are playing a tug-of-war with me over my daughter. They want the same thing that I do, and that is for Maddy to be completely healthy :)