Adventures in policy making

It is just food, after all.

They look at you like you are creating the most complicated situation ever to enter the hospital. 'We can't blend here.' Well actually you can, you just won't mix it together. Kids across the hospital are on pureed-only restrictions so I know you have a blender. And sitting across the table from us just happens to be a friend of ours who came to drop off our lunch. His daughter has been in 3 times this winter and you know them. She is on a blended diet. Bluff called. How do we make this happen?

Today the dietician came in on board. She even made a copy of Mya's recipe sheet I had brought in to share with her manager. They are going to work on setting up a standard way for parents to order a blended diet. The problem isn't that the hospital can't blend but rather that they like things done a certain way and nobody has established that way. So they are going to work on it. Maybe next time one of our daughters is admitted we wont have to mix purees and oil at the bedside. And we won't have to clog the tube for the first time since starting this diet because the lady on the phone didn't appreciate what was meant by 'as thin as you can make it'. No worries, we got it unclogged but I might bring a blender tomorrow.

Mya is doing much better today. She had her eyes open when I got here this morning and responded to my voice. Her lungs are looking clearer every day and her blood pressure seems to be under control. They are weaning off some of the ventilator support and scaling back on respiratory treatments. With any luck they will be able to extubate her early next week. We aren't sure how long we will have to stay after she is extubated, but we are taking it one day at a time. I already have someone working on getting insurance to cover a pulse ox monitor for home. Insurance had denied pulse ox monitors in the past. Apparently not being able to breathe for extended periods of time is not enough to warrant a monitor, so currently we just wait for her to scream herself awake if her mask gets off center without alarming. I think that system is pretty unacceptable in general but especially while recovering from pneumonia. So hooray for a woman with a plan.

We appreciate the prayers and the support. Mya is moving in the right direction but she is still a very sick and miserable little girl, so keep them coming.