First, I love him, I think he's brilliant. He and I are on the exact same wavelength. I dont think Ive had an easier discussion with a doctor. He was very, very helpful and I can't thank him enough. He gave us a very important prescription- TIME. Ellie is running short on time to gain weight before her surgery. If she cannot gain enough weight, not only will her surgery be postponed, but she will acquire a lovely NG tube. I have expressed my desire to avoid the NG tube at all costs from day one, but we're running out of time. She needs to fatten up and she needs to do it NOW. Although he said the NG tube would only be used at night, she would have to wear it all day every day. So she'll look... well... not unattractive... but like a baby with a tube hanging out of her nose. No more Gerber photo shoots for her, ha ha. He tried to explain how it would ease my stress, because instead of begging, pleading, wishing and praying she would take more in, she would. And I wouldn't have to do it, it would just be done. I appreciate him trying to put a nice spin on it but the reality is my daughter will have a tube running down the back of her throat pouring food into her stomach all night. He did say he would help me stall against time, offered me more ways to fatten her up (polycose and oil- as in canola or olive). He also asked about the distraction surgery, I explained with any luck Dr Williams (her plastic surgeon) will continue his advice against it, but just in case I have an appointment with him Jan 13th. I also mentioned her teething and that teeth help pull the jaw forward. My follow up with the GI doctor is the next day, Jan 14th. So it may be a moot point if Dr Williams postpones palate to do distraction.
I have 2 weeks to help her get up to 10 lbs. This will be the scariest two weeks of my life. I realize that in the world of PRS (and sometimes the world in general) an NG tube is pretty low on the things that often happen. Its not a trache, its not a regular G tube- theres no surgery. And I know my angel comes with some serious battles I have to fight. I just hope this is one I can win.