CT scan results

Last Tuesday, Maddy had her CT scan. There were two purposes to it, a) to check the stability of the cervical spine, and b) to assess the airways to see if there was any narrowing. 

We got the results back today and a) the stability of the cervical spine was inconclusive from this test, and b) the CT scan showed some narrowing of the airways at the larynx (voicebox area). 

The main concern at the moment is Maddy's airways. Although she's doing great at the moment, breathing independently (she has been for weeks now), and her O2 stats are always very good (I haven't seen them lower than 95 or so for weeks), the narrowest part of the airway is about 1.9mm instead of the normal 3.5-4mm. The doctor explained to me today that this narrowing would make it very easy for something like a simple cold to be a serious problem for Maddy, and also if she were to get a bit of milk or something in her airways, it would be very easy for this narrowing to become blocked. So as a result, oral feeding is probably out for a while at least.

Because of the results, the doctors want to go ahead with the bronchoscopy which will give a better image of the airways than the CT scan, however they still will not do it unless the orthopedic doctor clears the cervical spine first. And the orthopedic doctors will not clear the cervical spine just based on the CT scan, so the next step is to do an MRI.

The MRI is a bit more risky than the CT scan. It takes a longer period of time and so it will require a heavier sedation, and also as a part of the MRI they will maneuver Maddy's neck to be able to get images of her neck in different positions.

The MRI will be done in a week or two, and then IF that clears the cervical spine, the bronchoscopy will be done a week or two after that. (If it doesn't clear the cervical spine, I don't know what the plan is then...) Then based on what they find in the bronchoscopy, we'll see what we need to do from there. But in any case, it still looks like it will probably be at least another 3-4 weeks from now... 

I'm getting more and more frustrated and down about the whole situation. It just seems like with each step that they take, the end seems further and further away. And Maddy is just there waiting for the tests, not attached to any machines, doing seemingly so well. When she was born, I knew that she would need to go to NICU but I was expecting it to be for maybe around two weeks. It has now been a month already, and it's looking like it will probably be at least another month... I think I would be happier about it all if I could see an obvious "reason" for Maddy being in there, but the only reason she's there is to get these tests done, and also because I don't know how to replace a feeding tube and she can't feed orally... 

I want to try to talk with the doctors and see if it would be possible to bring Maddy home first and then to bring her back to the hospital as an outpatient for the tests. I've already asked that question before though and they weren't very receptive to it then... I might try again though and see what the doctor says this time. I'm just getting so worn down by all this... but I do want what's best for Maddy, not just what is best for me...