Wednesday, March 21, 2012
Emily has had two very rough days in a row. Emily has had a ton of coughing/gagging episodes that go on and on for hours. We have tried all her PRN meds and nothing helps. The only thing that helps a little is giving her some heavy narcotics to sort of knock her out. Mthere was a big team meeting last night about Emily. GI tells me the episodes are pulmonology, pulmonology tells me they are GI. I don't care what they are, or whose field they are, but she is miserable. It's not okay. Thankfully the Comfort Care Palliative Team here is amazing and standing p for Emily's comfort. Me are starting her on morphine for these episodes today. She has had an adverse reaction to morphine before, but it was 6 years ago. We are going to try a tiny dose first and see how she does. They are asking us some heavy questions. How far do we want them to go with her. What do we want if she codes. If she stops breathing. If her heart stops. If she needs a ventilator. It is surreal. Parents shouldn't have to answer questions like this about their 8 year olds. :(. Please keep Emily, and our family, in your thoughts.
at 8:45 AM