12/23: noon

It's nearly noon and Emily is still sleeping away. The attending Doc agreed to extubate at 7 hours and try to start feeds 4 hours later, but she has to wake up. I would be glad for the compromise, but with Emily's extremely low weight the risk of her becoming catabolic from the lack of nutrition I am not pleased.

All of that aside, my heart (actually the Holy Spirit) reminds me that I am not in control, and neither is the Doctor that I do not favor this morning. THE physician, God, knows what is happening and I do believe He is watching over us. I have to relax - for my families sake as well as mine.

Imagine, though, what it is like to live at a constant and accepted level of stress with your child's life hanging in the balance with every breath, for years. We've live by tried and trued ways of managing Emily's health, so we have grounded opinions, especially since the Standard of Care for SMA document was published. It's just crazy that we are having this fight yet again. The alternative to fasting is TPN, which is essentially food though through an IV. They
should have ordered TPN yesterday morning so we'd have it for the extubation, but it wasn't ordered, so now Emily has to fast. Why, b/c we didn't bug them about it. Lesson learned: bug the docs about everything so nothing will be left undone.

Please Lord, give me faith to understand how to deal with these frustrations when my daughters well-being is in the hands of someone inexperienced with her condition and not willing to adhere to the recommendations agreed upon by the actual experts.