Follow Up #1

So I started typing this, stopped to feed Evie and her gtube broke! Are you kidding me????? It still works, but doesn’t close anymore so we had to rig it up so her food doesn’t just leak back out after feeding. We have a spare with us, but this type really should be removed and replaced under anesthesia (it’s a Bard, non balloon style), so we’re hoping we can keep this one going until she needs to be put under anesthesia for an airway scope.

Okay, so follow up yesterday went pretty well. X-rays, though traumatic for both Evie and us, looked good. The distractors are separating the bone properly and the bone hasn’t grown back too quickly (which would require another surgery to recut the jaw). Her airway still doesn’t look open, so we’ll keep separating and go back next week.

So the good news is that it’s going just as it should. The bad news is that there’s nothing to fix, really. The process is just traumatic and difficult and painful. Fun. We did learn that if we shift the one screw that is wonky to straighten it out, it does turn much easier, but it’s just going to be stiff, I guess. We also were able to increase her pain meds and last night definitely went better, though we do have to keep up with them. Once they wear off, she’s a wreck.

So next week they’ll do X-rays again and see how her airway looks. If it looks good, we’ll do a scope of her airway and if that looks good, they’ll remove the exterior screws and we’ll head home. Everything is pretty up in the air since they can’t really predict how quickly her jaw will expand in relation to turning the screws. It’s not really a 1:1 relationship of 1/2mm turn of the screw equals 1/2mm separation of the bones. Lovely, right?

So prayers appreciated that next week, X-rays show that we’ve expanded enough, that we can get into the OR quickly for a scope of her airway, and that her gtube will hold out until she’s under anesthesia for the scope. Thank you everyone. I’ll try to post some pictures this afternoon of how her jaw is looking! We’re definitely noticing a difference now!


She was pretty worn out after yesterday’s appointment!


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