BOO! I was all ready to go, even had Jakob convinced he could separate himself from Toopy & Binoo, and Ellie went and spiked a fever, and started coughing up phlegm. Great.
So, Dr. D wants to keep her another day. Better luck tomorrow, hopefully!
We had another chat about tracheostomies. This time was just as pessimistic as yesterday's chat, with my being told "no showering, no trips to the mall on your own, she will have to be watched all of the time". We talked about the risks, the benefits of traching her, the risks and benefits of keeping her on bipap. There is no one quite like Ellie, and they really aren't sure what is best for her. Trachs have a lot of possible complications, including the risk of infection, scarring, unplanned decannulation, granulomas, and not knowing how long she will need the trach. Dr. D threw out "maybe six years, there's no way of knowing". There is also the inherent risk of putting a kid with PWS under general anesthesia, but if she needs tubes in her ears, we have the joy of going through that regardless of the airway decision.
I wonder, with all the risks involved, if they want me to say no. I'm speculating, it's hard to know what doctors are thinking, but harping on the risks, instead of on the long term benefits, doesn't do much for convincing me it's the right thing to do.
Ellie needs to grow, grow, grow out of this issue!
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