Big day for Shirley! She did well last night! She could have done better but we celebrate just about anything!
Shirley will have to remain on her vent for at least 24 more hours, but today she will receive breast milk through her NG tube for the first time! This feels like a huge win! There is of course some risk that she will not tolerate the milk but the cardiologist thinks she is ready and the nutritionist didn't have any objection. They will measure her stomach on fixed time intervals in order to determine if she is digesting the milk properly. They also want to take her drainage tubes out. She has two tubes placed in her chest currently one was placed after the surgery to help drain excess fluids and one placed when they closed her chest that drains fluids trapped behind her heart in her pericardial cavity (I think). Both have functioned well and drained a substantial amount of fluid. Whatever fluids are left to drain will be absorbed by the surrounding tissue. They will also be weaning her off the vent. She is still breathing beyond the RR the machine is set to but the vent is providing some support inflating her lungs as well as providing nitric oxide (NO) to lower the blood pressure in her lungs and in turn take some burden off the heart. The doc said that weaning is the easy part and that most children handle it well; it is from 1ppm to 0 that they tend to struggle with. She is currently receiving 2.5ppm and they plan to be at zero by sometime tomorrow morning. They are also removing her pacer wires. She hasn't needed them yet so hopefully she won't need them later! It is a big day for little Shirley.
We spoke with another family today that arrived the same day we did, their child was taken off the vent yesterday and they are moving out of the CICU today. Hopefully this will be the case with Shirley in a few days. The step-down unit is like having one foot out the door of the hospital. We are excited about her progress and can't wait for the day we can walk out of the building with her, strap her in the car, and head south to Tacoma. It will probably be a journey on par with Frodo's return to the Shire! Not sure why I thought of the Lord of the Rings and the Shire but it's just what came to mind when I thought about taking my girls home!
Please feel free to critique my medical jargon! I know there are at least a couple Dr's reading this, a few nurses, and perhaps even a respiratory therapist. Comments section below!
The first two photos were taken today and the last two a few days back.
-Joseph
