Talking Trachs Again

On my way out of the hospital yesterday, I ran into Dr. Dee. She was happy to see us, because apparently they had just been talking about Ellie in clinic, and the receptionist was going to call me to set up an appointment. Dr. Dee and I walked back to the respiratology clinic, and along the way we started chatting about Ellie. They're concerned about Ellie's mid-face hypoplasia (the underdevelopment of her nasal bridge, and progression of an underbite). Because Ellie grows while she is sleeping, and because she's always wearing her bipap mask while she's sleeping, her face is growing around the mask, rather than into the mask. As she is now on an increased dosage of growth hormone, the problem is only going to accelerate.
In addition to that, they don't think the bipap is bypassing all her obstructions, because she's not growing like they would expect, even on a relatively high dose of growth hormone. I know she still obstructs, the other day I hadn't finished cleaning her machine, but had her on her oximeter, and watched as she desatted to 63, and slowly came back out of it. Her apnea hasn't resolved at all, if anything it has gotten worse.
So, Dr. Dee told me that it is likely we will have to revisit the option of traching Ellie.
DH and I have talked about it a lot, we are really concerned about Ellie's face. The underbite is going to cause future orthodontic issues, as well as speech issues, not to mention the probability of permanent facial deformation. We would much rather have a stoma scar, than for Ellie to have to undergo reconstructive surgery on her face when she is older. A trach comes with a whole host of new responsibilities, more training, more equipment, and its fair share of risks, but in the long run it's probably what is best for her, because they don't know why she is obstructing, and because of that have no way of telling how long she will need ventilatory support a night.
Ellie goes in for a formal sleep study in August, following the long weekend, and then she will be admitted for a few nights so they can decide what to do with her. We're leaning towards pushing for a trach, despite trachs not being recommended for kids with PWS. Dr. Dee said Ellie is only one of two kids they've seen in their clinic with such severe sleep apnea and obstructions at her age, and it points to something other than PWS going on. Most of the contraindications for traching kids with PWS stem from their skin picking, which we're not into yet, and anesthesia related concerns (which wouldn't apply, since Ellie would be vented during the surgery, and post-operatively). So, who knows!
They want to figure out a plan before the fall flu/cold season strikes again.
In the mean time, planning for the possibility of this happening at the end of summer, we're going to do everything she might not be able to do with a trach, like go to the beach, go swimming, etc... so that she's at least had the experience!